What Our Migraine Doctors Do and Don't Discuss with Us

Shake-things-upThere are certain Migraine related issues that our doctors should discuss with us — issues of which we may or may not be aware unless someone brings them to our attention.

I've been astounded at the number of Migraineurs who say their doctors have never mentioned two of them in particular:

  1. Migraine trigger identification and management.
  2. Medication overuse headache.

Seriously! It's not as if the knowledge of these issues is carried to us in our genes as Migraine disease is. Unless someone clues us in, we don't know about them. I'll offer myself as an example. I've had Migraines since I was six-years-old, but I didn't know about Migraine triggers until I started researching Migraines online when I was 45-years-old. That was also when and how I learned about medication overuse headache. By that time, I'd seen 13 or more doctors for my Migraines.

This problem can occur even when seeing Migraine specialists. It's not limited to non-specialists.

I'm not quite sure yet how to address this problem, but it's time we shake things up a bit and let doctors know this is unacceptable. I do know that I'm going to need some data on this so I can present it to people who are in a position to help with this problem. And that means that I need some help from you — the Migraine patients who are on the front lines and so strongly impacted by what our doctors do and don't discuss with us.

PLEASE take just a couple of minutes to complete this very brief survey — Has Your Doctor Discussed...?

It would also be very helpful and greatly appreciated if you'd share this post with those you know who have Migraines, and ask them to complete the survey too. Pretty please? Thanks!

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.


Monday Morning Migraine Blues

You know, Mondays are rough in the first place, but adding a Migraine triggered by a weather front, and I have the Migraine Blues...

Migraine Blues was written and performed by Dr. Fred Sheftell, a friend and mentor. Dr. Sheftell passed away nearly a year ago. You can read about Dr. Sheftell in Celebrating Fred Sheftell - Friend, Migraine Specialist, Great Man.

I still miss him. Here's to you, Dr. Fred!

Live well,


 

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© Teri Robert, 2012
Last updated February 20, 2012.


The Twisted Road to Help for My Migraines

TwistingRoad200

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.


He Said WHAT About Your Migraines?

MimeQuestioningToday's Health Activist Writer's Month Challenge prompt is to write about the most ridiculous thing we've everheard about health or our condition, so for me, that means Migraine.

The problem with this challenge is that there have been too many of them. It was beyond diffiuclt to choose, but I did it. I chose this statement not only because it's so ridiculous, but because it has the potential to cause so much harm. This is a statement made to a Migraine patient who had been going tohim for just six months. Here it is...

"Sorry, but there's nothing more
that can be done for you."

What?! Are you freakin' kidding me? Anyone who knows me also knows what my response was to that. It was, "Fire his sorry butt!"

For those not familiar with Migraine disease and its treatment, let me elaborate about why that statement is so riduclous and why I say it's potentially harmful...

  • This statement was made after only six months of trying to help the Migraineur find effective preventive treatment. Six months! It takes up to three months to give a medication a fair trial and know if it's going to work.
  • There are now so many medications being used for Migraine prevention that it would take over 25 years to give each of them a three-month trial.
  • How pompous was this doctor? Just because he didn't know anything else to try doesn't mean "there's nothing more than can be done." A good doctor would have said he didn't know what else to do and would have helped the Migraineur find another doctor to work with.
  • Patients often believe idiotic statments such as that one, and when they do, they sometimes give up.
  • The WHO has stated that a severe Migraine attack is as debilitating as quadriplegia. How could a doctor just give up and set their patient up to give up too?

Obviously, that statement made me angry. I generally do try to be a bit more tacful when I speak about other people, but let's face it, this docto is an idiot. More than that, he's an uncaring, unfeeling idiot. If he doesn't care more than that for his patients, he has no business being a doctor. He gives other doctors a bad name. Shoot, he gives other human beings a bad name!

image from www.msteri.comIf a doctor has ever made that statement to your or implied as much, don't just walk away from him or her - RUN! Resist the temptation to smack the doctor silly. You don't want to get arrested, and you're a bigger person than that anyway. It's prefectly fine to tell him he's an idiot. In fact, I'd be hard pressed not to if a doctor ever said that to me.

But... know this... there are some fabulous doctors out there who won't give up on us unless we give up on them. They're intelligent, caring, passionate, and compasstionate professionals who truly care about us as patients and want to help us reduce the burden of Migraine disease and improve our quality of life. Don't let one idiot stop you from seeking good care from anotehr doctor. That would let the idiot win.

Finding effective Migraine treatment can take time and patience, but it can be done, and it's so very worth it. Look past the white coat to the person underneath. Find a doctor who cares and will work with you as a treatment partner.

Nothing more that can be done?! Grrrrrrrrrrrrrrrrrrr.

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

Live well,


 

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© Teri Robert, 2011
Last updated November 28, 2011


Migraine Rescue: When Our Regular Treatments Fail

7Essentials#6-125 What is it that constitutes good Migraine Management? This morning, I read an email from a woman who's struggling to find a doctor who is willing to give her a shot when her "regular" Migraine treatments fail and she needs help. To my way of thinking, she shouldn't be having to worry about this. The doctor who treats her for her Migraines should have this covered.

This is what's called rescue treatment - treatment we use when the treatment we normally use when we get a Migraine fails. When our Migraine treatment fails, we're in bad shape. We're usually in a lot of pain and plagued by other symptoms as well - nausea, vomiting, photophobia, and more. If our first-line treatment fails - and it will fail sometimes - we and our doctors should have a rescue plan and rescue treatment in place. It's not realistic to expect us to be able to go to the doctor when this happens. First of all, getting anywhere is terribly difficult and adds to our pain. Some people live alone. How are they supposed to get there? If it's a weekend, after hours, a holiday, or during our doctor's vacation, then what? Relying on an emergency room in these situations is even worse. Many emergency room personnel don't want to see Migraineurs, and again, it's difficult to get there.

In a truly comprehensive Migraine management regimen, rescue treatment is an essential element. Have you and your doctor discussed rescue treatment? Do you have rescue treatments in your Migraine took kit?

You can learn more about rescue treatment in Migraine Management Essential 6: Rescue Treatment.

Live well,


 

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© Teri Robert, 2011
Last updated May 5, 2011


Celebrating Fred Sheftell - Friend, Migraine Specialist, Great Man

Kruz-me-sheft The Migraine and headache world experienced a great loss this week when Dr. Fred Sheftell died following a long and brave fight with cancer. In the photo to the right, that's Dr. Sheftell on the right with Dr. John Claude Krusz and me.

Dr. Sheftell filled many roles during his life...

  • husband to Karen
  • father to Lauren and Jason
  • Migraine and headache specialist
  • author - 11 books and over 200 peer-reviewed articles
  • researcher
  • co-founder of the New England Center for Headache
  • past president of the American Headache Society
  • founder of the World Headache Alliance
  • a member of the Migraine Research Foundation's Medical Advisory board
  • chairman of ACHE the American Headache Society's Committee for Headache Education

Fred was also my friend and mentor. When I told him that I had a contract with HarperCollins to write Living Well with Migraine Disease and Headaches, he offered to write the forward, and from then on, it was "our book." He welcomed me to American Headache Society meetings, was always willing to answer any questions I had, and always challenged me to figure things out and keep learning. The other day, I described him as, "Widsom, knowledge, generosity, and kindness -- all wrapped up in a package with arms that were quick with a hug."

Today, the Migraine Research Foundation send out a notice saying, "It is with profound sadness that MRF mourns the death of Dr. Fred Sheftell. A member of our Medical Advisory Board since 2007, Dr. Sheftell was a visionary leader, a Migraine activist, a wise advisor, and a champion of MRF. He will be sorely missed."

Fred was also a great musician. He combined his talent for music with his passion for treating Migraine and other headache disorders to do a CD called Migraine Blues that was originally for continuing medical education. Later, videos of the songs were released on YouTube and the songs were released on iTunes. Here's the video of the title song, Migraine Blues:

I'm going to miss Fred a great deal. He was truly one of the "good guys." I hope you'll watch the video above and join me in celebrating his life. If you knew him and want to do something in his memory, his family has asked that donations be made to the American Migraine Foundation.

Live well,


 

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© Teri Robert, 2011
Last updated April 14, 2011


Migraine Pearls or Onions? 3/2/11

PearlsOrOnions125 When it comes to online Migraine information, the quality of what we find has quite a wide range. It can be bright, polished, and valuable, or it can be... well, rough and stinky.

This feature, "Migraine Pearls or Onions?," highlights both the Migraine Pearls I come across online and the stinky Migraine Onions.

Today's Migraine Pearl and Onion came about because of a post written by a new member on MyMigraineConnection.com. A mother posted about something a mother should never, ever have to face. Her son took his life because he couldn't deal with daily Migraine pain any longer. He didn't have the coping skills for it. Please, take a few minutes to read about this in Migraines: Never "Nice," Sometimes "Fatal."

If you've ever had daily Migraines and / or headaches, or if you're close to someone who does, you know that while we're working with our doctors to find an effective preventive regimen they can't give us something to take away the pain every day or it makes matters worse by causing medication overuse headache, which - in turn - keeps preventives from working. So, it's a draconian period of time when we can have pain-free time only sometimes. To survive this period of time, we need to have excellent coping skills for living with such chronic conditions. Many of us need help developing and / or maintaining those coping skills.

Pearl100 So, first up...today's Migraine Pearl... today's pearl goes to all of those doctors who recognize that we often need help developing and maintaining coping skills and incorporate that development and maintenance into our treatment. On a personal level, I salute all the doctors at the Jefferson Headache Center in Philadelphia - Dr. Young, Dr. Silberstein, Dr. Nahas, Dr. Tramuta, and the other great doctors there. My first visit to the Jefferson was the first time in more than 35 years of Migraines that anyone had ever even mentioned coping skills or depression to me in relation to the Migraines that I'd had since the age of six. Part of my initial visit there was a session with Dr. Tramuta (a psychiatrist) to evaluate me for depression and to evaluate my coping skills. I went into that session with a hugs chip on my shoulder because of all the times I'd been told that my Migraines were "all in my head." He kindly explained his reasons for seeing me, and knowing he was there for me if I ever needed him was a great comfort. Dr. John Claude Krusz, who currently helps me maintain my Migraine treatment regimen, also makes sure that all of his patients are screened to ensure that they have adequate coping skills and that, if they have depression, it's being treated. Every doctor who treats patients for Migraine should do this.

Onion100 And, today's Migraine Onion. Today's onion goes to all of the doctors who treat Migraine, but never evaluate their patients' coping skills or screen them for depression. Shame on you. Especially to the doctors who told the son of the mother I referred to earlier that he "needed to learn how to live in pain." You, sir, have no business practicing medicine. You are a disgrace to truly caring physicians. I wouldn't actually wish it on you, but you deserve to be in pain and not be able to find anyone who cares enough to help you. You deserve to be told to just "learn to live in pain." Someone should shred your medical license.

If you'd like to make a suggestion for a
Migraine Pearl or a Migraine Onion,
please leave me a comment!

Live well,


 

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© Teri Robert, 2011
Last updated March 2, 2011