Putting Our Heads Together

Migraine Treatments - We're running out of time. Can you spare five minutes?

Good morning, dear readers,

Today, I'm writing to you somewhat differently from my usual way of doing things. This is more personal. More from the Migraine and headache sufferer me. More from the your friend me.

Some thanks and a plea...

To all of you who responded to the Alliance for Headache Disorders Advocacy Action Alert and emailed your members of the house, my very, very deepest thanks.

To those of you who have not yet responded to the Action Alert, I make this plea...

Can you spare five minutes, please? That five minutes will help everyone who has Migraine disease and / or other headache disorders now AND in the future.

This is an extremely important issue to me; not only professionally, but personally. Generation after generation of both sides of my family have lived with and suffered with Migraine disease. From my great grandmother to my grandchildren, this disease has taken its toll on our lives. For years, I have wished for a way to DO something that would make all of our lives easier, healthier, and happier.

I have lost 50% of the vision in my right eye and 25% of the vision in my left eye because of low-tension glaucoma. Glaucoma specialists have told me that it was most likely caused by the years of having horrid Migraines before type of abortive medication was available to me. Intraocular pressure (the pressure inside the eye) is elevated during a Migraine, and the periods of elevated pressure during the years of untreated Migraines damaged my optic nerves, causing the glaucoma and the vision loss.

Now, we have two daughters in-law and three grandchildren who have Migraine disease. Our granddaughter Alexandra had her first Migraine at the age of 2-1/2. I don't want her to go through what I have gone through over the last 47 years of Migraines; what many of you have gone through. I don't want her education, career, having her own family to be disrupted. I don't want her to face the possibility of blindness because of this disease. As you do for your children and grandchildren, I want better for her and for our other grandchildren. And it goes without saying that I want better for you and for myself.

Monday, March 17, is the last day for your Member of the House to sign the "Dear Colleague letter" from Congressmen Welch and Moran. So, we are down to the last days to send your emails.

I know everyone is busy and that many of you may well be in pain. That's one reason we're doing all we can to make this very easy to do. This was our first Action Alert, so we've had a few things to learn along the way.

The easiest and least time consuming way to send an email to your Member of the House regarding this Action Alert is to go directly to THIS PAGE.

 

The image above is of the "Take Action" section of the page. Just follow the directions, and you'll have a great email to your Member of the house in just minutes.

You can read the two sections of preset "required" text that we've put in place so you don't have to worry about an introduction or wording the closing section, which specifically asks our Members of the House to sign the Dear Colleague letter.

You can see the arrow pointing to the area where you can write a bit of a personal message about how Migraine disease and other headache disorders impact you or others you know.

Even a brief paragraph or two can be very powerful, but if you're not comfortable adding anything in that area, you can leave it blank. If you do write something for this part of the email, you may find it helpful to save it on your computer as a text document so you can use it again later when we write to our Senators.

After you click the red "Send Message" button, the next  page that comes up presents an opportunity to enter the names and addresses of six people. If you choose to enter those names and email addresses, an email will go to them asking them to join you by writing an email of their own. If you don't want to do this, that's fine.

Following these steps, you will get a confirmation screen showing that your email has been sent. You will also receive an email from me and the other officers of the Alliance for Headache Disorders Advocacy thanking you for your help.

No system is perfect, so if you do not receive that thank you email, please repeat this process to send your email. This has only happened in a few cases, but I do want you to know about it so you don't miss out on this opportunity.

If you subscribe to our mailing list, you'll receive email updates when it's time to act again. I promise you that your email address will not be shared with anyone or used for any purpose other than keeping you updated on our advocacy efforts.

From the bottom of my heart, thank you for taking the time to read this and for taking the time to email your Member of the House. Together, we CAN make a difference in the future of the treatment available to us.

 

Take Action NOW for Better Migraine and Headache Treatment!

Do we  want, need, and deserve better Migraine and headache treatments? Absolutely yes!

Think there's nothing you can do? But there is! You can take five minutes to send an email to your Representative in the House of Representatives. It's easy and only takes about five minutes. The Alliance for Headache Disorders Advocacy site is set up for us to send an email to our Representative, even if we don't remember who he or she is.

PLEASE, go to www.AllianceForHeadacheAdvocacy.org NOW. Click the "What YOU Can Do" link in the left column. You will go to our Alert Center. There is a box with our Featured Alert. Simply click the red "Take Action" button in the Featured Alert box. That will take you to a letter that's ready for you to add what you want to say about this issue, fill in your name and address, and have your email sent directly to your Representative. It is urgent that you do this NOW because the House is setting 2009 funding appropriations in just a few days.

Here's one undeniable fact for you...

Continue reading Take Action NOW for Better Migraine and Headache Treatment!

Migraines, headaches, pain, and HOPE!

I spent last week in Dallas at Dr. John Claude Krusz's clinic, ANODYNE Headache and PainCare. Dr. Krusz and I have written Ask the Clinician for almost five years now, but this was the first chance I'd had to visit his clinic and observe him with patients.

Dr. K's patients were very gracious; all of them allowed me to sit in on their appointments. Listening to him review a new patient's medical history was a great reminder of how much other issues can impact Migraine, headaches, and pain. Dr. K. asks all of his patients about their sleep patterns and whether they or anyone in their family have a history of problems with thryoid, diabetes, or other endocrine disorders. Sleep is always one of the first issues he addresses, telling patients that good sleep is essential to their treatment.

Continue reading Migraines, headaches, pain, and HOPE!

migraines

Thyroid Disease Can Be Cormorbid To Headaches & Migraine

Comorbid conditions are conditions that occur at the same time as but independently of each other. With Migraine disease, perhaps the most common comorbid condition is major depressive disorder (clinical depression). Approximately 47% of Migraineurs also experience major depressive disorder, but neither causes the other.

Comorbid conditions can have significant impact on effective treatment of the individual disorders. Thyroid diseases, including hypothyroidism, are among the conditions now know to often be comorbid with headaches and migraines. A strong connection has been found between hypothyroidism and new daily persistent headache (NDPH) and chronic migraine. Continue reading...

Back To School With Headaches and Migraines

It's that time of year again. That time when it's still summer, but time for school to start is sneaking up on us. Parents know that time all too well. There are school clothes and supplies to be purchased, class and bus schedules to review, and seemingly countless other details to deal with.

When your child has a chronic illness, whether it's headaches, Migraines, or a different illness entirely, we really can't afford to put off getting our children ready for school. There are extra steps that need to be taken; extra preparations that need to be made. Let's take a look... Feature Article.

Medco... Skip their customer service; it's useless!

Today, I can honestly say that I understand why some people buy medicaitons from those Internet pharmacies that don't require prescriptions!

Our medical insurance includes prescription coverage, and we're strongly "encouraged" to order our meds in 90-day supplies from their mail-order provider, Medco. In fact, we're so strongly encouraged that when we do order through Medco, our part of the cost is 25% of the prescription price; as opposed to the 50% we have to pay if we use local pharmacies for meds we take on a regular basis.

On June 30, I went to Medco's Web site and ordered refills of my Verelan PM and Singulair prescriptions. Over the weekend, I went to their site, and saw that the prescriptions weren't scheduled to ship until July 13. To make matters worse, I received an automated phone call this morning. The call informed me that shipment of my prescriptions had been delayed and instructed me to call customer service if I had less than a three-day supply on hand.

Given the fact that I'd taken the last of those meds yesterday, I called customer service. The agent estimated the delivery date to be July 20, 10 days away, and did a computer authorization for me to be able to pick up a 7-day supply at our local pharmacy. He said that was the best he could do.

Now, I'm not the best at math, but even I can tell that means I'd still be three days without medication. I wouldn't be concerned about some meds, but the Verelan PM is actually prescribed by three of my doctors for severe hypertension, coronary artery disease, and Migraine prevention. It's not just inconvenient for me to be out of that drug, it's potentially dangerous.

I emailed Medco's customer service department, and the only thing that was in their obviously copied and pasted email that hadn't been said on the phone this morning was that I could call one of their pharmacists of I have "any questions about the effects of missing doses of your medication." Well, I don't need to talk with a pharmacist to have that question answered. I've been very well educated by my doctors about the possible consequences of missing doses.

So, if you're making any decisions regarding insurance prescription coverage, and you have choices, I'd tell you to give careful thought before enrolling with Medco. Not only do they sometimes have problems with delays on delivery, they don't seem to be much concerned with the risks to patients of not having our medications.

The Basics of Clinical Trials

We often hear about new treatments literally years before they're available to us because they're reported on when still in clinical trials. What are clinical trials? How do they work? With the answers to these questions, you can learn more about them and determin if you may be interested in participating.

Choosing to participate in a clinical trial is an important personal decision. These frequently asked questions provide detailed information about clinical trials. In addition, it is often helpful to talk to a physician, family members, or friends about deciding to join a trial. After identifying some trial options, the next step is to contact the study research staff and ask questions about specific trials. Feature article.

Headache or Migraine Emergency: ER or Urgent Care?

Imagine this scenario... You've had a Migraine for three days. It's out of control, has lasted long enough to be classified as Status Migrainous, and you know you need help. It's also the weekend, and nobody is in at your doctor's office. Sound familiar? Unfortunately, that scenario or at least one that's similar, is familiar to all too many people who suffer from Migraine disease or severe headaches.

Recently, the National Headache Foundation (NHF) conducted an online survey to compare the care received and the attitudes met with during visits to the ER and urgent care facilities (UC). The study provided some interesting results... Feature article.

Radio Today: Dr. Krusz on Trigeminal Neuralgia

Surf on over to VoiceAmerica Radio (online radio) this afternoon for an hour-long broadcast about trigeminal neuralgia. Dr. Krusz will be guest hosting Helen Dearman's show, "Pain Tamers: Living With Chronic Pain." The show is live at 4 p.m. central time, 5 p.m. eastern time.

Dr. Krusz's guest for today's broadcast will be Michael Pasternak, President of the Trigeminal Neuralgia Association...

TNA (The Trigeminal Neuralgia Association) was established in Barnegat Light, NJ in 1990 by founding President Claire Patterson and a board of directors comprised of TN patients and their families. Prior to its formation, most TN patients suffered in isolation and knew very little about the disorder and its treatment. TNA’s founding mission was to improve the quality of life of TN patients through programs that empower patients to become knowledgeable about their condition and treatment options, that aid patients with chronic pain, that educate non-specialists on matters of diagnosis and treatment, and that encourage appropriate medical research.

What Is... Pseudotumor Cerebri?

Simply speaking, Pseudotumor Cerebri is a condition in which the body either produces too much cerebrospinal fluid pressure or doesn't absorb it well, resulting in increased cerebrospinal fluid pressure. This condition can be related to headaches and Migraines.

Pseudotumor cerebri literally means "false brain tumor" because it's symptoms mimic those of brain tumors. It is also (more accurately) called Idiopathic Intracranial Hypertension (IIH). The term idiopathic is applied because it's cause is not truly known. Feature article.