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Living with Migraines - Thoughts on a Sunday

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It's been a tough week in the Migraine and headache community, and that's really an understatement. Everywhere I turn, people are suffering, physically and emotionally.

The weather seems to have a personality disorder - it can't decide if it's winter or spring. That's triggering Migraines for many of us. Cluster sufferers are having a tough time too.

There was a suicide in the community last week. I don't know if I'm more sad or angry about it. I'm sad for the woman who took her life, but I'm so angry at her ex-husband that he should be glad he'll never have to face me. He's one of those not-a-freakin-clue jerks who is so selfish that he divorced her over her Migraines. If I had my way, he'd meet the fate that servants used to face in ancient Egypt and be buried with her. The stigma of Migraine stuck again.

OK, taking some deep breaths here. A friend of mine, Mary Seroski, sent me a link to a YouTube video that I just have to share with you. It's undoubtedly the most beautiful video I've ever seen. I watched it and marveled at the beauty of it and of all of God's gifts it depicts. It gave me hope. I hope it will do the same for you...

Live well,


 

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© Teri Robert, 2012
Last updated February 26, 2012.


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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Get the latest Migraine and headache news, informational articles, tips for living well, and more in my free weekly newsletter. To subscribe, CLICK HERE.

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


Serene Branson on Migraines - A Year Later

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This year's Grammy Awards marked a year since Serene Branson experienced a frightening Migraine on-air while reporting from the Grammy Awards.

At the time, she never would have thought she'd be teaching others about Migraine and helping raise awareness about the disease, but that's what happened.

A couple of days ago, I saw the video of an interview with Serene from the Los Angeles CBS affiliate where she works. She talked about that night and what this year has been like. She said the experience was:

"... a big wake-up call to listen to my body and pay attention to my health."

For more from Serene, and to see the video of this interview, continue to Serene Branson on Migraines - A Year Later.

Live well,


 

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Get the latest Migraine and headache news, informational articles, tips for living well, and more in my free weekly newsletter. To subscribe, CLICK HERE.

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© Teri Robert, 2012
Last updated February 17, 2012.


February 2012 Migraine & Headache Blog Carnival

BlogCarnival125 Welcome to the
February, 2012
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 "Tales from the Trenches: Experiences (good and bad) on the road to finding the right Migraine doctor.," and it's hosted by Diana on Somebody Heal Me.

Check out this month's great collection of blogs in February Headache & Migraine Blog Carnival: Finding a Headache / Migraine Specialist.

Live well,


 

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Get the latest Migraine and headache news, informational articles, tips for living well, and more in my free weekly newsletter. To subscribe, CLICK HERE.

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© Teri Robert, 2012
Last updated February 15, 2012.


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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Get the latest Migraine and headache news, informational articles, tips for living well, and more in my free weekly newsletter. To subscribe, CLICK HERE.

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


Migraine Pearls or Onions? 2/9/12

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Looking for Migraine information online? You'll find it in abundance! The question is whether it will be accurate and unbiased.

Online infomation can be bright, polished, and valuable - like a pearl - or it can be... well... rough and stinky - like an onion.

This feature, "Migraine Pears or Onions?" highlights both the gleaming Migraine pearls I come across and the malodorous "Migraine Onions."

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Today's Migraine Pearly goes to Tammy Elder Rome for proactively seeking information and answers about Migraine disease and speaking up when she sees online content that's wrong or could be better.

I met Tammy on Facebook, and although Migraines have a significant impact on her life, she works at staying positive and proactively learning about the disease and working toward better Migraine management. Brava, Tammy!

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Yesterday, Tammy pointed out a piece on FoxNews.com that's today's Migraine Onion. Dealing with migraine headache in children is an answer to a mother with an eight-year-old child with Migraines written by Dr. Manny Alvarez.

Dr. Manny refers to Migraine as "an 'adult' illness that affects a young child," in the beginning of his article, and that's the first problem. Migraine isn't an adult illness; nor is it an illness of childhood. It's a disease that affects people of all ages.

Here are some other problems with Dr. Manny's answer:

  • He advises the mother to have her child seen by a board certified pediatric neurologist for diagnosis. A specialist isn't always necessary for a child to be appropriately diagnosed. Depending on the child and the doctor, their pediatrician or family physician may well be able to handle this. If a specialist is needed, a pediatric neurologist may not be the best choice. Neurologists aren't necessarily Migraine specialists, and Migraine specialists aren't necessarily neurologists.
  • Dr. Manny comments that it can be difficult to get a proper medical history from children. OK, but the accompanying point about medical history that he ommitted is that it's important to get the child's family medical history too because Migraine is genetic. Big omission.
  • He states, "Most likely, a physician will prescribe a non-steroidal, anti-inflammatory drug such as Tylenol." Seriously? Tylenol isn't an NSAID. It's a simple analgesic.
  • His statement, "Prevention, of course, is even more effective than treatment," is quite accurate, but he had to go on to saythat there tend to be two cuprits in pediatric Migraine - nitrates and MSG. Again, seriously? Although those are fairly common triggers, to only mention these two triggers in relation to pediatric Migraine? Any doctor should be able to do better. Many children (and adults) have no food triggers whatsoever. One would hope that he'd mention other triggers including dehydration, irregular sleep patterns, and several others.

In the end, this answer just plain stinks - definitely an onion. Dr. Manny might do well to consult one of his pediatric neruolgist friends OR a Migraine specialist.

Live well,


 

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Get the latest Migraine and headache news, informational articles, tips for living well, and more in my free weekly newsletter. To subscribe, CLICK HERE.

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© Teri Robert, 2012
Last updated February 8, 2012.


Migraine Favorite Things - Sobakawa Pillow

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There was a discussion the other day on a Facebook Migraine group about pillows. We were talking about pillows that were comfortable and weren't Migraine triggers.

There are some pillows available that seem like they'd be great because of their size, shape, the way the support the head and so on. But you get them and discover that they're filled with something "natural" that turns out to have a fragrance or oder that's a trigger or that the substance that's a trigger itself.

That's no help! :-O

I shared my favorite pillow with that group, and it occurs to me that I should share it with you too. When I first saw it advertised on television, I was skeptical, really skeptical. But I was also ever so weary of all the pillows piled in our guest room, none of which I ever find comfortable when I have a Migraine.

When I saw the Sobakawa on television again, I decided to try it. It had a money-back guarantee, and I'm not shy about sending things back if they don't live up to their guarantee. This time, I wasn't disappointed. I loved the pillow. My husband tried it, and he liked it well enough that my pillow became his pillow. (Isn't that always the way?)

By then, the Sobakawa was available on Amazon.com, my favorite place to shop because we use thier annual Amazon Prime shipping option.

Here are some of my favorite features of the Sobakawa:

  • It's filled with micro air beads that have absolutely no fragrance or odor to them. 
  • The air between the beads keeps the pillow cooler than other pillows I've used.
  • The pillow will conform to my head and shoulders.
  • It only takes a light touch of my hand to adjust the shape of the pillow.

They say it can be place in the freezer for a cooling effect, but we never have that much open space in our freezer. I HAVE, during cold weather, put it in a plastic bag and set it out on the porch for  a while. That IS nice when I'm feeling hot and horrid with a Migraine.

If you're looking for a new pillow, you might want to check out the Sobakawa Cloud Pillow w/ Bonus Case.

Live well,


 

Puz-only-btn


Get the latest Migraine and headache news, informational articles, tips for living well, and more in my free weekly newsletter. To subscribe, CLICK HERE.

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© Teri Robert, 2012
Last updated February 6, 2012.