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Sunday Thoughts on Living with Migraine 7/31/16 - A Letter to Spouses

Happy-SundayGood Sunday morning to you all. As always, I hope the day and your head will be as kind to you as possible today and in the coming week.

Yesterday, I had a heart-wrenching conversation with a friend who has Migraine. She finds herself in a situation that's all too common. She has chronic Migraine and is struggling with not just the Migraines, but with a pretty much total lack of support from her family.

This type of situation makes me extremely sad. It also makes me pretty angry, especially when it's a spouse who's not being supportive because it's... well, it's just so wrong. As cliché and naive as this may sound, when we marry, we pledge to support each other, "in sickness and in health." People who don't really mean it, shouldn't get married. Once married, people need to stick by their pledge. To me, it really is that simple.

Yes, I know this may be somewhat futile, but I want to reach out to spouses of other Migraineurs who aren't supportive of their spouses. Here goes:

Dear Migraine Spouse,

You're married to someone who has Migraines. Migraines truly aren't headaches. Migraine is a genetic neurological disease caused by genetic predisposition and an overly excitable brain. It's characterized by episodes best called "Migraine attacks." If your spouse gets a headache during their Migraine attacks, that headache is only one symptom of the attack, and it may not be the worst of most debilitating of their symptoms. In fact, some very debilitating Migraine attacks occur with no headache at all.

Migraines can be triggered by many different things including changes in the weather, hormonal fluctuations, exposure to fragrances and other odors, some foods, and more. Triggers vary from one person to the next. Unfortunately, we can't stop our Migraines by simply changing our diet or exercising more. It's just not that simple. Some people's Migraines are so severe that they are unable to work, participate in family activities, or do many things that others take for granted.

Migraines can actually kill by causing fatal strokes or so thoroughly robbing people of hope that they take their own lives. Support from our friends and family is as vital to our survival as good medical care.

I'm sure your spouse's health issues seem burdensome to you. But, I can guarantee you that their Migraines are far more burdensome to them than they are to you. It can be difficult to know how to help your spouse with their Migraines. It can also be difficult to not be able to do more to ease their pain and suffering. There is much you can do to help your spouse, starting by supporting and believing in them. That's possibly the most valuable thing you can do for your spouse.

Learning about the type of Migraines they have and their treatments is also important. If you don't understand their Migraines and treatments, it's going to be difficult for you to help and support them. It's often a good idea for spouses to go to the Migraineurs' doctor's appointments with them. This gives you an opportunity to learn, know what the doctor is telling your spouse, and ask any questions you may have.

There are still many misconceptions about Migraines and a great deal of stigma attached to the disease. You need to know, however, that Migraine is a real neurological disease every bit as much as multiple sclerosis and epilepsy are. It's just perceived differently by many people, possibly because it's invisible, and there are no diagnostic tests that say, "Hey! This person has Migraine disease."

If, for some reason, you haven't been supportive of your spouse in his or her battle to live with Migraine disease, I hope you'll search your heart and work to be more supportive. Please let your spouse know that you want to understand and to help them.

Thank you!

TeriSig250White

If you want a copy of this letter, you can download it.

I'd be remiss if I didn't also say that there are many, many spouses who are incredibly understanding and supportive of their Migraineur spouses. They're the heroes who prove that people who have never had a Migraine in their lives can indeed understand what it's like for us to live with Migraines. John (my husband) is, thankfully, an example of this. He's never had a Migraine, and seldom even gets a Headache. Yet, for the last 30 years, he's been here for me when a Migraine strikes, when I needed to see a specialist eight hours from our home — for all of it. He may not know what a Migraine feels like, but he absolutely understands what it's like for me. So, to all of those spouses — Thank you! You're all heroes, and I love all of you.

Here's hoping that the coming week is gentle with all of us.

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

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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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Sunday Thoughts on Living with Migraine 7/24/16

Happy-SundayGood Sunday afternoon to my Migraine and Headache family. It's a beautiful day here in West Virginia — pleasantly sunny with a nice breeze and no drastic weather changes predicted in the next couple of days. I hope the weather where you are is being kind to you and that your head is being kind to you today.

I spent a couple of days in Phoenix last week. Wow! Talk about hot. It's definitely not a time to be spending a lot of time outdoors there unless you do well in temperatures over 100 degrees.

For a while now, I've known that I really need to learn to travel lighter. When I went to a conference last month, I had a carry-on, my backpack, plus the Spring TMS device for my Migraines to take on the plane, and the suitcase I checked weighed 53 pounds. I had enough trouble getting my luggage from the baggage carousel at the air port out to a taxi, and more trouble when I got to my hotel only to find that there were no bellmen to be found. I was sharing a room with a friend who breezed in with two carry-on sized bags for the entire week. Grrrrrrrrrr. OK. If she could travel that lightly, I could certainly do better.

Travel-LightSo, here's my attempt at doing better. I switched to a slightly larger backpack that would hold my laptop and most of the items from my carry-on. The big job was convincing myself that I didn't need those extra shoes, the extra tops I tend to pack, the spare pair of pajamas, and all the other "stuff" that really could be left at home. The suitcase I packed was a smaller one than usual, one that I could actually drag off the luggage carousel at the airport with minimal effort.

My reason for sharing this with you today is that some of my friends who also have Migraines have said they have some of the same issues I have with packing and ending up with luggage that's unwieldy and makes travel more difficult.

I'm happy to report that I did indeed have everything I needed, and it was so much easier to travel this way. For my next trip to Arizona, I'll need to take more clothes since I'll be there four days longer, but I'm determined to take less than I've taken before and to enjoy how much easier it is to travel with less.

If you have any packing or travel tips, please leave a comment to share therm!

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

Visit MigraineDisease.com

 

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Cefaly II for Migraine Prevention - Additional Info

CefalyIIYesterday, I told you about the new Cefaly II that's now available in the United States for Migraine prevention. People in the UK and Canada wondered if and when it would be available to them. So, I asked for additional information. The Cefaly II will be available in Europe (including the UK) in September. I don't have an availability date for Canada yet, but will let you know when I did.

There's also additional information for people in the U.S. who already have the Cefaly I. People with the Cefaly I can order the Cefaly II without getting a new prescription. Your original prescription will be honored for the Cefaly II. Also, you will receive two sets of three electrodes at no additional charge.

I hope the additional information is helpful. If you missed my original post about the launch of the Cefaly II, just follow this link — New Cefaly II Launched for Migraine Prevention.

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

Visit MigraineDisease.com

 

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Page copy protected against web site content infringement by Copyscape© Teri Robert, 2016.

 


New Cefaly II Launched for Migraine Prevention

CefalyIICefaly Technology announced the release of the new Cefaly II for Migraine prevention today. The Cefaly II is a pocket-sized model of their FDA-approved Cefaly I. Here's the press release from Cefaly Technology:

NEW YORK, 18 July 2016 _ CEFALY Technology announced today that Cefaly®, the first FDA-approved external trigeminal nerve stimulation device for the prevention of frequent episodic migraine attacks, has undergone a massive makeover. Cefaly® I, which gained popularity for its unique headband-like shape, is now three-quarters its size, fits in the palm of your hand, is rechargeable, uses magnets to stay in place, and allows patients more control over the intensity of their daily session. The new Cefaly® II, is available exclusively in the United States; it will become available next in Europe in September.

 

“This compact device is so easy to tuck in a pocket or purse and I am hopeful it will further increase compliance and bring an even larger reduction in migraine attacks to patients,” said Dr. Pierre Rigaux, the chief executive officer of CEFALY Technology, and a member of the team that invented the device.  “Cefaly® I has a tremendous success record. In clinical trials 81% of compliant patients showed a significant reduction in migraine attacks and up to a 75% reduction in consumption of migraine medications. Now that the device is so small, it’s a big deal because patients can have their Cefaly® II with them wherever they go, which means they’ll be able to use it more readily, at their most convenient time.”

 

Cefaly® is an electronic, battery-powered, device that is placed on the forehead for 20-minutes once a day, using a self-adhesive electrode and a magnetic connection. The device sends tiny electrical impulses through the skin to desensitize the upper branches of the trigeminal nerve and reduce the frequency of migraine attacks. The new device allows patients to control their session by ramping up the intensity to their desired comfort level. Also, the introduction of a magnetic connection means the device will more quickly fall into place  – and more securely maintain its connection – rather than be affixed to a fastener where a small movement could occasionally interrupt the session.

 

Also new is a built-in rechargeable Lithium-ion Polymer 3.7 V battery that replaces the two AAA batteries, which contributed to the device’s shape and bulk. The new battery allows for the Cefaly® II to be charged either by a USB cable on a home or work computer, or through a wall charger.

 

The new pocket-sized Cefaly® II device includes a USB cable, wall charger, a storage case, and one electrode. Cefaly® II may be ordered online at www.cefaly.us. The device costs $349 and comes with a 60-day money back guarantee. A pack of three electrodes costs $25; each electrode may be re-used up to 20 times. Cefaly® II is available by prescription-only and indicated for patients 18 years of age and older. Women who are pregnant or could become pregnant should check with their doctor before using Cefaly®. In clinical trials, only 4.3% of people reported side effects -- all of which were minor and fully reversible.

 

About CEFALY Technology

CEFALY Technology is a Belgium-based company, with US offices based in Wilton, Connecticut, specializing in electronics for medical applications. It has developed external cranial stimulation technology for applications in the field of neurology; in particular for treating migraines. For more information, visit http://www.cefaly.us. Find Cefaly on Twitter: @Cefaly and on Facebook: http://www.facebook.com/CefalyEN.

 

My Migraine specialist prescribed the Cefaly I for me, and I used it faithfully every day for six months. Sadly, it didn't help me, BUT I know people for whom it has made an enormous difference by significantly reducing the frequency of their Migraines.

 

The Cefaly II appears to have wonderful improvements over the Cefaly I. It's obviously smaller and lighter, and the rechargeable battery should please Cefaly users. One thing to keep in mind is that the lithium battery means that you don't want to put this in a checked bag and get on a plane. Remember to treat it with the same respect you'd treat any other piece of electronics with a lithium battery.

 

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

Visit MigraineDisease.com

 

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Sunday Thoughts on Living with Migraine 7/17/16

Happy-SundayGood morning! I hope the weather is pleasant where you are and that Migraine (and all other headache disorders) will be kind to you today. Sunday has become the day when I take some down time to review the week that has just ended and think about the week to come. Inevitably, my thoughts turn to my Migraine family and how y'all are doing.

Last week was another one filled with news of violence, terrorism, and war. We're all feeling it. For some, stress can be a Migraine trigger. For others, it's not the stress itself that trigger Migraines during stressful times — it's things we do or don't do during stressful times that are the true triggers. So, I want to remind everyone that we need to take time away from television, computers, phones, and other sources of news to just "be." We must take care of ourselves, or we can't take care of our families and be there for people who count on us.

Here are some avoidable triggers that we may encounter during stressful times:

  • Not drinking enough fluids, and becoming dehydrated.
  • Drinking too much caffeine.
  • Grabbing quick foods and snacks that contain MSG or other ingredients that are Migraine triggers for us.
  • Skipping meals or eating at irregular times.
  • Not sleeping well, or sleeping on an irregular schedule.
  • Crying.

Speaking of triggers, a friend texted me the other day to say that she and her husband were away for a two-week vacation, and she'd awakened each morning so far with a Migraine. When I asked if she and hubby were getting up at the same time on vacation as they did at home, she told me that they'd been sleeping in. She texted me the next day to say they had set an alarm and gotten up at the same time they would have at home, and... NO Migraine!

So, my take-away points from last week are:

  • We need to take time away from the news.
  • We need to take care of ourselves.
  • There are some avoidable potential Migraine triggers that we can encounter more during stressful times.
  • If you find yourself waking with a Migraine, a sleep issue may be the trigger.

If next week starts feeling overwhelming, please be kind to yourself. Take some time to close your eyes and breathe deeply, to meditate, to think of the things that make you happy. For many years now, I've taken some quiet time first thing in the morning to pray, meditate, and center myself for the day. That habit has made my days better. Lately, I've found myself needing to repeat that time in the late afternoon or early evening. If you need this kind of break, please take time for it. We can't allow ourselves to feel that we're to busy to take that time to care for ourselves.

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

Visit MigraineDisease.com

 

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Sunday Thoughts on Living with Migraine 7/10/16 - What Truly Matters?

Every-life-mattersGood morning, and may Migraine be kind to you today. Sunday has become my day to take stock - to review the week gone by and look to the week ahead.

Last week was a tough one for everyone, but not necessarily because of Migraine. Last week was one during which, even if we had a Migraine, we were more concerned with the real-life horror going on around us. Last week, it seemed that hatred and death were behind every news story. We heard, "Black lives matter," and "Police lives matter," and both are right. They're not mutually exclusive.

What was perhaps even more troubling to me was how the anger and hatred trickled down into people who weren't involved in any of the events and how it manifested. On my Facebook news feed, I found FB friends posting such hatred and vitriol that I was shocked — and horribly saddened. Some said such vile things that I "unfriended" them and blocked them from my Facebook page. Being Facebook friends is voluntary, and I won't voluntarily bring that kind of negativity into my life.

This morning finds me sad and even frightened. Reacting to violence and hatred with more violence and hatred won't fix a thing. It hardens the heart and darkens the soul. Where is our country headed? Where is our world headed?

This may seem simplistic, but it's true — Acting or speaking from violence and hatred are decisions people make, and too many people are making that wrong decision. The consequences of that decision are what we're seeing.

Regardless of religious preferences, these verses from the book of Matthew make sense:

Matthew 22:36-40King James Version (KJV)

36 Master, which is the great commandment in the law?

37 Jesus said unto him, Thou shalt love the Lord thy God with all thy heart, and with all thy soul, and with all thy mind.

38 This is the first and great commandment.

39 And the second is like unto it, Thou shalt love thy neighbour as thyself.

40 On these two commandments hang all the law and the prophets.

Here's hoping that the coming week is less eventful. Wouldn't it be great to have a boring week?

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

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Donation to American Migraine Foundation for Migraine and Headache Research

AMF-R4R-AHMAIn San Diego last month, it was my great pleasure to present a donation of $17,434 for Migraine and Headache research to Dr. David Dodick, Director of the American Migraine Foundation.

The donation came from two Runnin' for Research runs/walks held in Morgantown, West Virginia, and Louisville, Kentucky, last year. Runnin' for Research had placed the race profits with the American Headache and Migraine Association (AHMA) for disbursement.

Although the name is the American Migraine Foundation (AMF), the AMF does a great deal to help people with all Headache disorders, including implementing a program to assist in the development of headache clinics in academic medical centers and the American Registry for Migraine Research (ARMR). ARMR is a database containing information about patients diagnosed with migraine and other headache disorders—including their age, gender, headache type and characteristics, severity and frequency of attacks, treatment history, family history, and other medical information including physical samples (known as a biorepository) from each patient for genetic analysis. ARMR is a valuable tool to advance research to help scientists understand the causes of migraine and other headache disorders and move closer to finding safer, more effective treatments to eventually find a cure.

The mission of Runnin' for Research is "to improve the quality of life of those who suffer with headache and migraine disorders through fundraising for quality research and the promotion of patient empowerment, community awareness, and local and national advocacy."

The American Headache and Migraine Association is the patient arm of the American Headache Society. AHMA's mission is "to help those affected by Migraine and other Headache Disorders find and use our voices to empower patients, family members, friends, and care partners. Through education, support, advocacy, and research we will bring hope and banish the feelings of hopelessness that too often accompany these disorders. We will work to dispel myths and misconceptions, thereby working to eliminate the stigma we face all too often and replace it with compassion and understanding."
    

AMF-Donation-160609

For more information on any of these organizations, see their web sites:

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

Visit MigraineDisease.com

 

Follow me on    or 
 

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