Migraine Pearls All Around to the Jefferson Headache Center

Migraine-Pearls-OnionsIf you're not familiar with this series, you may be wondering what pearls and onions have to do with Migraine and other Headache disorders. I'll explain.

Migraine Pearls are awarded to the "gems" in the Migraine community for valuable, shining patient care... educational content and support... current and accurate information... things of value. Migraine Onions, on the other hand, are awarded to "stinky" things in the Migraine community — old or inaccurate content... things that perpetuate misconceptions and stigma rather than fighting them... worthless products, eBooks, etc... and more.

Patty Haughton emailed me with a nomination that led to today's Migraine Pearls, so it's fitting that I quote Patty about why Dr. William Young, Jen Cho, and the entire team at the Jefferson Headache Center are hereby awarded Migraine Pearls. Patty told me:

I currently live in Delaware, 30 miles from Jefferson. I moved far away, twice, and commuted by plane and train to see Dr.Young. He has been irreplaceable and years ahead, with regard to knowledge and treatment of migraine, of any other "headache specialist " I have seen. It is Dr. Young's relationship with his patients that truly sets him apart from others in the field. He always has time for another question and never pretends to have all of the answers. I feel as if we are team addressing the migraines. He involves me in every decision.

I would like to thank Carla, Margaret, and Diane, by name, and then mention and all the support staff at Jefferson Headache Center. Carla, Margaret and Diane always greet me by name in the waiting room, even if I have not been assigned to them. They, Dr. Young and Jenn Cho, treat the whole me, not just the headache. They ask about my family and my life and remember details from visit to visit. Again, I feel a member of a team rather than just a recipient of care.

I hear patients in the waiting room who are new to the Center , mumble about the long wait times. I have never minded waiting, because when it is my turn to be seen, the visit is relaxed and anything but rushed. I have also come to the Center with somewhat urgent headache needs, and I have been seen quickly.

I didn't mention in my last email that Bill Young is much more than his patients' physician. He spends countless hours, as do you, advocating  and lobbying for research funding for headache. His efforts in outreach for awareness of and education about headache is evidenced the tremendous increase in Headache on the Hill participation.

In summary, am nominating Bill Young, Jenn Cho and their entire headache team at Jefferson Headache Center for a Pearl.

Patty's nomination struck a chord with me. Dr. Young was the first Migraine and Headache specialist I saw, and I'll be forever grateful for his knowledge, help, and compassion. One of the first things he said to me at my first appointment was, "I won't give up on you if you don't give up on me." Neither of us gave up, and with his help, we reduced my Migraine frequency from 25 to 30 days a month to just one or two. That didn't last forever, but when things changed and my Migraine frequency increased, I was far better able to cope while looking for new treatment options because of all Dr. Young had taught me.

Pearl100Congratulations to Dr. Young, Jen Cho, Carla, Margaret, and Diane, and the entire staff of the Jefferson Headache Center! You're true gems in the Migraine community, and greatly deserving of Pearls!

Patty, thank you for nominating these wonderful people!

Do you have someone you'd like to nominate for a Migraine Pearl or a Migraine Onion? If you do, I'd love to hear from you. You can email me by clicking the "Email Me" button in the right column of this blog.

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

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Ask Migraine Specialist Dr. Rob Cowan a Question

QuestionDr. Rob Cowan, a magnificent Migraine and headache specialist and director of the Stanford Headache Center is accepting questions about headache disorders through 5 p.m., Pacific time, tomorrow (Friday, March 8).

Selected questions will be answered on the Stanford Medical blog Scope.

Dr. Cowan is a perfect person to answer Migraine and headache questions. He's a wonderful specialist, has Migraines himself, is a published author on the topic, and is active in advocacy efforts on behalf of patients with Migraine and other headache disorders.

To ask Dr. Cowan a question, Tweet it with the hashtag #AskSUMed or post it in the comments section of this Scope blog entry - Ask Stanford Med: Director of Stanford Headache Clinic taking questions on headache disorders.

Live well,

PurpleRibbonTiny Teri1
 

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© Teri Robert, 2013
Last updated March 7, 2013.


The Twisted Road to Help for My Migraines

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One thing I can't say about my Migraines is that I haven't learned from them. One of the biggest lessons I learned is that many doctors know little to nothing about Migraine disease, starting with the fact that Migraine IS a disease.

Doctors have fed me so much nonsense about Migraines that I could fill a long blog post with that alone, including:

  • "It's a woman thing."
  • "They're just headaches. Take your meds."
  • "Have a baby."
  • "Have a hysterectomy."
  • "Take these birth control pills"
  • "Congratulations. You're an intellectual. You have Migraines."

About 17 years ago, my Migraines became frequent enough that I needed help. My family doctor didn't know what to do to help me. The neurologists where I live had given me some of the advice above, so I wasn't going back to them. My family doc suggested a neurologist about 90 miles away, so my husband took a day off work, and off we went.

Dr. Heck was a kindly gentleman who made me think of someone's loving grandfather. He was wonderful. He suggested propranolol (Inderal) for prevention and prescribed a starting dose and scheduled a follow-up appointment three months later. The propranolol helped, and over a few appointments, he adjusted the dosage. It was great. I also had high blood pressure, so it addressed that as well. Best of all to my way of thinking, it reduced my Migraine to only about half a dozen a year.

Unfortunately, as often happens, the propranolol stopped working for Migraine prevention after a few years. About 12 years ago, I was in bed all day five or six days a week with the Migraine from hell. Doctors in my area were still no help, and Dr. Heck had retired. My family doctor told me there was a new doctor in the same city Dr. Heck had been in, and she was supposed to be a Migraine specialists. I'll just call her Dr. R.

Dr. R. prescribed Topamax - 100 mg twice a day - and told me to come back in three months. Topamax didn't help with my Migraines at all, but I had horrid cognitive side effects from it. I'd walk across the room to do somthing, then forget what it was. No way did I trust myself to drive alone. At my follow-up appointment three months later, Dr. R. insisted that I hadn't given it enough time, and told me to come back in another three months. This went on for nine months during which she refused to see me any more frequently than every three months, depsite the horrid pain I was in, my other debilitating symptoms, and the fact that Topamx was doing nothing but causing side effects that were as debilitating as the Migraines.

Thankfully, all of this made me angry. I say, "thankfully," because when I'm angry, I'm very unlikely to give up or give in. I hit the Internet looking for information. Of all the information I found, the most practical and immediately helpful was learning that there are doctors who specialize specifically in the treatment of Migraine and other headache disorders and that neurologists aren't, by default, Migraine specialists.

I met a woman online who had been in a situation very similar to mine and had found help with Dr. Willam Young at the Jefferson Headache Center in Philadelphia. That's an eight-hour drive from my home, but I was desperate. Being in bed five or six days a week meant I had no life. I couldn't do anything for or with my family, certainly couldn't work, didn't dare make plans for anything. I told my family doctor I wanted to go see Dr. Young. He put through the insurance referral, and I called for an appointment. That turned out to be the next hurdle. At that time, there were only two doctors at the Jefferson, so I had to wait nine months for my first appointment.

When that day finally arrived, one of the first things Dr. Young said to me was,

"I won't give up on you if you don't give up on me."

That one sentence gave me hope. It also turned out to be very characteristic of working with Dr. Young. He never gave up on me. He always reviewed the options with me, and we made treatment decisions together. We started making progress with my Migraines in the first six months and kept going. Eventually, the treatment regimen we perfected reduced my Migraine frequency to the point where it was "normal" for me to get eight weeks between Migraines. There's no cure for Migraine disease at this time, but that's the next best thing.

Today, because of some other health issues and having to reduce some of the medications in my preventive regimen, my Migraines are more frequent again. I now have access to a good Migraine specialists just two hours from my home, so I'm working with him to adjust my treatment regimen and regain better control over the Migraines. This time, I'm not all that worried about it because along that long twisted road to help, I learned a great deal about Migraines and about Migraine specialists. It may take some time, but I'm confident that we'll get my regimen adjusted and my Migraines fairly well controlled again.

The biggest reason I wanted to share all of this was to let others who may be in a situation similar to mine know that there ARE good doctors who know about Migraine and want to help us. There aren't enough of them, and sometimes we have to travel a bit to get to them. For me, it was worth every second, every mile, every dollar spent to get my life back. I'll always be glad I hit the Internet looking for help, and I'll always be grateful to Dr. Young and the Jefferson Headache Center.

Live well,


 

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© Teri Robert, 2012
Last updated February 10, 2012.


Living with Migraines - Thoughts on a Sunday

ThoughtsSundaySunday is often a day when I try to plan my week and what I'm going to write about Migraines and related issues. Maybe it's the holiday season or realizing that 2011 is nearly over, but today, I find myself also thinking about people who have Migraine disease, the treatments available, what we do and don't understand about Migraine... the big picture and the smaller picture of the individual Migraineur.

I spent most of yesterday online and on the phone trying to help and encourage other Migraineurs who are especially frustrated right now. They're really hurting, and many of them are also frustrated that their doctors don't know what to do next. Some are frustrated that we don't have better treatments. Some are in that terrible place in their minds where many of us have been, that place where we feel like giving up on doctors and treatments and trying to "just live with it." My heart goes out to every one of these dear people. Heaven knows I've been there too.

It's a bit ironic that the two qualities my mother always said would be my downfall have probably been the very qualities that have kept me from giving up when it comes to my Migraines - stubbornness and temper. I'm just too stubborn to give up, and getting angry was the push I needed about 10 years ago when I first sought care from a Migraine specialist. I was angry with the Migraines, and I was angry with the doctors who offered me platitudes instead of help.

Being stubborn and getting angry keep me going until I met Dr. William Young at the Jefferson Headache Center. Within six months of my first appointment, we were making progress controlling my Migraines. They were still a big problem, but still, it was progress. Neither of us gave up, and we eventually got to the point where I usually had at least a month between Migraines, sometimes longer. Now, I'm not saying that anger is necessarily a good thing. What I am saying is that we shouldn't give up or give in.

An extremely difficult issue I see Migraineurs facing is their families and friends not understanding Migraine. They feel isolated. They feel guilty. Just yesterday, someone wrote to me:

"I wish I could learn to have your attitude...unfortunately I don't feel the people around me really understand migraines and I still carry the guilt of having them. People just don't seem to want to really understand what they're all about."

Wow. I've been there, haven't you? Here's where I am with that - I've learned what friendship really is, and if people are our friends, they'll make the effort to learn a bit about Migraines, understand, and support us. If they won't do that, you know what? They're really NOT our friends. Oh, it's not easy to get to the point of looking at things that way, but let me tell you something. In the end, the person I absolutely have to live with, the person who absolutely needs to be my friend is me. That means I'd darned well better like and love myself, and doing that means recognizing if other people are true friends or not. I'd rather have one good friend that lots of so-called friends who are only there when I'm feeling well and can do things with them and be a lot of fun. Real friends stick with you no matter what.

Another issue I came across yesterday was someone who commented about "Big Pharma" not developing new treatments for Migraine. I can understand that way of thinking and have had some issues with pharma myself. Still, I have to say that I can't blame pharma for the lack of new Migraine treatments. Pharmaceutical companies are for-profit companies that have shareholders and boards of directors to answer to. They're not nonprofit charitable organizations. To develop new Migraine treatments that go beyond what we have now, researchers need a clearer understanding of the pathophysiology of the disease, how it works and what goes on in our bodies during a Migraine. That kind of seminal research isn't the kind of research that pharma companies can undertake. It's the kind of research that's funded by the government, mostly through the National Institutes of Health (NIH). We're not going to see new and effective Migraine treatments until more of that basic research is conducted. That's why the Alliance for Headache Disorders Advocacy (AHDA) has been lobbying for increased research funding for Migraine and other headache disorders and is currently lobbying for Congressional hearings about the impact of Migraine.

Explaining the issues with new treatments and research funding started me thinking about Migraineurs and what we can do to help ourselves. Of course, we need to learn about Migraine and work with our doctors as informed treatment partners to develop the best possible treatment regimen. But until there's more research funding, it's going to continue to be more difficult than it needs to be. For example, did you know that there are no medications on the market that were originally developed for Migraine and headache prevention? Nope. Not a single one.

So, here's where I run into an issue that has me thinking for hours at a time without coming up with any answers...

On November 22, the AHDA set up a petition to Congress urging them to hold the first ever Congressional hearing devoted to MIgraine and headache disorders. That was 19 days ago, yet fewer than 2,000 people have signed this online petition. We've emailed over 25,000 people with information about the petition. It's also been Tweeted about and posted all over Facebook. It takes literally less than two minutes to sign it online. All a person has to do is go to the petition and enter their name, email address, and zip code.

I truly just don't understand this. Posted all over the Internet and over 25,000 people emailed about it, and fewer than 2,000 online signatures. I understand that people with Migraine aren't well, but if they're well enough to read email and visit Facebook, they're well enough to sign the petition. If we won't take two minutes to sign that petition, how can we expect other people to care enough to try to help us? That petition will be sent to members of Congress, and we'll be taking copies with us when we visit members of Congress during the AHDA's Headache on the Hill event in March. But I have to tell you -- unless people start signing it, Congress isn't going to pay any attention to the petition or our request. Why should they? We can stand there and tell them that more than 37 million Americans have Migraine, but how can we stand there and tell them that those Americans need and deserve better treatment when we can't get them to sign a petition? They'll laugh us right off Capitol Hill.

Can you help me understand this? If you've seen information about the petition but haven't signed it, why not? Leave me a comment telling me why you haven't signed it to help me understand, please?

If you haven't signed the petition, please sign it now? Just follow this link to sign the petition. After you sign it, a page will come up that helps you share the link via Facebook, Twitter, and email. Please share it with as many people as possible. If you're talking to others and want to share the petition link, here's one that's pretty easy to remember, www.MigraineAdvocacy.org/petition.

There are still other thoughts spinning through my head, but I think I've written enough for one post. Thank you for reading all of this.

Live well,


 

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© Teri Robert, 2011
Last updated December 11, 2011


Migraine - Never Have But Want To; Never Have, Never Will

NhbpmLogo150Thinking about Migraine and my work, today's Health Activist Writer's Month Challenge prompt is easy! The challenge:

Never Have I Ever. You stick to your guns – now tell us about what. What is something you’ve never done but want to. What’s something you’ve never done and won’t budge on?

I've never been able to attend the International Headache Society's International Headache Congress (IHC) when it was held outside the United States. The IHC is held every two years and offers a superlative opportunity for learning and networking with Migraine and headache specialists from around the world. I attended the last IHC held in the U.S. in Philadelphia in 2009. It was amazing, so amazing that I want to attend all of them.

One thing I've never done and never will do is to give up and let Migraine disease win. There have been times when I was curled up in bed five or six days a week, all day, with a Migraine from hell, but I didn't give up on finding help and effective treatment. I sought help from a Migraine specialist, and for several years, had one Migraine a month or fewer. Because of some other health issues and having to reduce the medications that were helping prevent my Migraines, they've gotten more frequent again, but I'm not giving up. I'm seeing a specialist next week.

To anyone with Migraines, I would say, "Don't give up!" There IS help out there. If your doctor isn't able to help you, get to a Migraine specailist. It's important to know that neurologists aren't necessarily Migraine specialists, and Migraine specialists aren't necessarily neurologists. If you need help finding a specialist check my listing of patient recommended Migraine and headache specialists.

HAWMCBannerThis post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

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© Teri Robert, 2011
Last updated November 25, 2011


January 2011 Migraine and Headache Blog Carnival: Taking Charge in 2011

BlogCarnival125 Welcome to the January, 2011, Headache and Migraine Disease Blog Carnival!

The Headache & Migraine Disease Blog Carnival has been created to provide both Migraine and headache patients and people who blog about Migraines and headaches with opportunities to share ideas on topics of particular interest and importance to us.

The theme of the January carnival is "Taking Charge of Our Migraines in 2011."

Are you ready to read some great posts? Here we go...

The February 2011 carnival will be on the theme of "Romantic Relationships & Migraines: How are they affected? Is is possible to build a new one? Does anything about living with a chronic condition bring you closer?" Submissions will be due on Friday, February 11, and the carnival will be posted at Somebody Heal Me on Monday, February 14. You can submit entries by sending them to this email address or by using the blogcarnival.com website.

All of us wish you the very best in 2011. May we all have fewer Migraines and more joy.

Live well,


 

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© Teri Robert, 2011.
Last updated January 10, 2011.


Migraine Specialists: Do You Need One?

MigraineSpecialists166 How well does your doctor understand and treat Migraines? Unfortunately, medical schools still teach very little about Migraine disease. In some medical schools, what's taught is still old information that has now been abandoned by experts in the field.

Having the right doctor or doctors on our health care team is essential. We literally place our lives in their hands. Many Migraineurs have found that working with a true Migraine and headache specialist has resulted in better treatment and Migraine management than they've ever had before. For me, taking the step of going to a Migraine specialist was the real turning point in my controlling my Migraines rather than them controlling me.

At one time, I thought neruologists were Migraine specialists. Now, I've learned that neurologists aren't necessarily Migraine specialists, and Migraine specialists aren't necessarily neurologists. Neurologists are pretty much the general practitioners of all things neurological. When you think of it that way, it's easy to see that they can't possibly stay up-to-date on or be specialists in every disease, illness, and injury that they treat.

The good news is that there ARE doctors out there who truly specialize in Migraine and other headache disorders. They limit their practices to this field, and they participate in continuing medical education in the field.

It's not always easy to find a Migraine and headache specialist. There aren't enough of them, so sometimes, we have to travel a bit to see one. When I first realized I needed a specialist, there wasn't one in the entire state of West Virginia, so my husband and I traveled eight hours, each direction, to the Jefferson Headache Center in Philadelphia so I could see Dr. WIlliam Young. It was worth every mile, every minute, every dollar.

So many people ask me for help in finding a specialist that I maintain a listing of recommended specialists. All of the specialists on the listing have been recommended by their patients or by another specialist whom I know and whose judgement I trust. I don't put specialists on this listing because they ask to be added. I DO check the medical license of each of the doctors included in the listing at least once a year.

Do you need to find a specialist? I've just updated our listings and have added several doctors. You can look for a specialist in Recommended Migraine and Headache Specialists.

Live well,


 

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© Teri Robert, 2011.
Last updated January 5, 2011.


Migraines, Doctors, and Pharma Company Dollars

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Does the doctor who treats your Migraines and / or headaches receive payment from pharmaceutical companies for speaking engagements?

ProPublica recently published a block of content, called Dollars for Docs, on doctors being paid by pharmacuetical companies, mostly for speaking engagements during which they educate other doctors about medications they use in their practices. In an editorial, ProPublica questions the objectivity of these doctors and suggests that being paid by pharmaceutical companies compromises their judgement and the care we receive from them.

Treating Migraines and headaches is difficult to say the least, especially for those of us who are "difficult cases." There are too few specialists, and our family doctors and general neurologists treat too many conditions to be even remotely able to keep up with the medications and other developments in the treatment of every condition they treat. The doctors who are part of pharmaceutical company speaker bureaus take their time to prepare and speak to groups of doctors who are interested in learning more about particular medications. They are NOT told what to say by the pharmaceutical companies; they speak from personal experience and knowledge.

To think that these doctors could do this without compensation is naive or foolish. Contrary to popular belief, very few doctors make a lot of money practicing medicine. The costs of practicing medicine are skyrocketing just like every thing else in this economy. Staffing, office rent or mortgage, equipment, supplies, malpractice insurance, and so on. If doctors accept Medicaid, they're often paid less than it costs them to treat those patients. Medicare is nearly as bad. It all adds up to reduced income for the doctors. And yet, they have the same needs and dreams that we have -- a home, raising children, saving for retirement. I know of several Migraine specialists who no longer see patients for this reason. They've gone into research instead. If they can supplement their income by sharing their knowledge and expereince with other doctors -- which, in turns, helps the patients of the other doctors -- MORE POWER TO THEM!

The people at ProPublica seem to think that doctors should take time from our appointments with them to tell us if they're paid speakers and give us the detaisl. Yeah, right! Does your doctor have enough time in his day to add that time to every appointment? Of course not. That would mean taking away from the time we have with them -- time that needs to be spent on our health care.

So... Does the doctor who treats your Migraines and / or headaches receive payment from pharmaceutical companies for speaking engagements? Mine do, and I think it's great that they can share their knowledge and expertise with other doctors so those doctors can give their patients better care. If they supplement their income while they're  at it, that's fine by me. If they were the kind of people and doctors who would be swayed or biased by it, they wouldn't be the great doctors that they are.

Live well,


 

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© Teri Robert, 2010
Last updated November 8, 2010