Sunday Thoughts on Living with Migraine - Human Barometers

Happy-Sunday-CapGood morning, and happy Sunday to my extended Migraine and Headache family!

How many of you think the weather is out to get us? The temperature got up to 79° here in West Virginia on Friday. In the wee hours of Saturday morning, we were hit with two to three hours of thunderstorms. Then, the temperature got up to only 40° yesterday. What kind of weather is that? It's the kind of weather that's the perfect recipe for a Migraine for those of us for whom changes in barometric pressure are a trigger!

I've been crossing my fingers and feeling extremely grateful that the Spring TMS device, used preventively, spared me from a weather triggered Migraine over the last couple of weeks. At the same time, I've felt so awful for all of you who have been hit hard with Migraine attacks triggered by this quickly changing weather. I know how difficult those Migraines can be, and I know I'm bound to get hit hard sooner or later.

Looking back at how changeable the weather has been and ahead at the weather forecasts, it doesn't appear that we're going to get a break from the weather changes any time soon, so I've been making sure I have what I need on hand so I'm not caught unprepared. So, I thought some of you might find it helpful if I share my preparations so we can compare notes.

Here's what I've done to prepare:

  • made sure my Migraine attack pack is stoked with:
    • my favorite little pillow
    • my favorite cuddly blanket
    • tissues
    • peppermint Migraine smelling salts
    • peppermint Migraine roll-on
    • my iPod and its charging cable
    • my bluetooth speaker to use with the iPod (I love the music, but the allodynia that accompanies my Migraines makes earbuds or headphones very uncomfortable.)
    • an extra pair of warm socks because Migraines make my feet colder
  • set several natural peppermint tea K-cups beside our Keurig machine
  • set several Irish Breakfast Tea K-cups beside the Keurig for quick doses of caffeine
  • made sure there's Diet Dr. Pepper in the fridge
  • made sure there are crackers, canned soup, and comfort foods in the Migraine section of our kitchen pantry
  • charged my Spring device
  • put my Migraine abortive and rescue meds on the kitchen table where my husband and I can both grab them quickly
  • warned my husband that the weather from hell is continuing

Of course, I'm still hoping not to get smacked down with a Migraine from the barometric pressure changes, but it doesn't hurt to be prepared. Do you have suggestions to share? If so, please post a comment below!

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

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Sunday Thoughts on Living with Migraine – Doctors and Migratude

Fall-SundayHappy Sunday to my Migraine and Headache family! Many of us have had problems due to the weather over the last week. Hopefully, today will be better, and you'll have as pleasant a day as possible.

Over the past week, I've had a couple of conversations about what has been the most helpful element of my ongoing Migraine management efforts. This is a very common topic since all of us want to make progress in this area.

My answer to this question has always tended to be that the most important element of Migraine management is a good, knowledgeable doctor who will work with me as a treatment partner. A doctor who will outline all of the options, then make decisions WITH me, not FOR me. My Migraine specialist, Dr. David Watson, loves working this way. If you'd like to see more about how we work together, see Managing Migraine.

What's occurred to me after talking with people like Dr. Watson is that our attitude is as important as finding the right doctor to work with as a treatment partner. Dr. Watson and some other Migraine specialists I know have pointed out that the best of doctors can't manage our Migraines for us. It has to be a true partnership, and that includes our going into the partnership with an attitude that's primed for success, not failure.

LifeChallengesMigratudeWe all know that it can be easy to feel that we've "tried everything," easy to lose hope. But that presents us with multiple problems, not the least of which is that if we go to a new doctor thinking that there's nothing he or she can do to help us, or if we start a new medication thinking it's going to fail, we're sunk. That old self-fulfilling prophecy is going to rise up, bite us, and working with that new doctor or trying that new medication will fail because our minds are stronger than our bodies.

Now, let's be fair here. This applies to our doctors too. Little makes me angrier than when a fellow Migraineur tells me that their doctor said there's nothing left that they can do to help them. Seriously? Well, let me set you straight on that. It would take a very rare case indeed for there to be nothing nothing left to try. There are so many preventive options available today that to give each one of them a fair 90-day trial would take in excess of 25 years of trying a new one every 90 days with no breaks. There are fewer abortive and rescue options, but for a doctor to say there's nothing left to try is simply unacceptable.

So, what's the most helpful element of Migraine management? There are two:

  1. a good doctor who's willing to work with us as treatment partners,
  2. a good attitude on the part of both the Migraineur and the doctor.

That's where the word "Migratude" comes in.

We must combine our aptitude for learning about and coping with Migraines with a positive attitude toward Migraine management and living with Migraines to come up with a...

great Migratude!

I'll leave you with a bit of inspiration from the magnificent Patti LaBelle...

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

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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"

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Let's Talk Migraine - Triggers

Lets-Talk2We all know that doctors have less time to discuss our Migraines during our appointments these days. Still I'm still shocked when someone tells me that their doctors have never discussed their Migraine triggers with them — or worse still, never even told them that Migraines HAVE triggers.

I've had Migraines since I was six-years-old. Nobody ever told me about triggers. I thought Migraines just happened and didn't learn any better until I was in my 40's, my Migraines became chronic, and I sought care from a Migraine specialist.

Have you and your doctor discussed your Migraine triggers? Do you discuss them when you go for follow-up appointments. For more on this important issue, please read Two Vital Migraine Related Issues That Doctors Often Don't Mention.

Live well,

PurpleRibbonTiny Teri1
 

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© Teri Robert, 2015
Last updated April 1, 2015.

 


Migraine Gem - Medications Approved by FDA

MigraineGems190There are over 100 medications and supplements being used for the prevention of Migraine and headache. When we get frustrated with trying to find preventive treatments that work for us, it's helpful to remember that there are so many options.

Do you know how many of them are actually approved by the FDA for that purpose? Do you know how many of them were originally developed for Migraine and headache prevention?

I think you'll be amazed by the answers. You can find them in Medications Approved by the FDA for Treating Migraine.

Live well,

PurpleRibbonTiny Teri1
 

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© Teri Robert, 2013
Last updated August 28, 2013.


Migraine Awareness Month 26: "From The Outside Looking In"

AwarenessMonth2012BC2Good morning, and welcome to day 26 of National Migraine Awareness Month!

Today's prompt for the Awareness Month blog challenge is:

Migraine Awareness Month #26: "From The Outside Looking In."
Write about what you think your family, friends and others think a day in life, a day with Migraine disease is like.

From the outside looking in...

Most of my family and friends are only vaguely aware of my job as a patient educator and advocate.  It might surprise you to know that the majority of them don’t even know where I work other than ‘online’. 

I have never asked them what they think my days are like, but they occasionally give me a little insight with the things they say.

Sadly, some of my friends think that I spend all day long visiting Dr Google, obsessing over my health conditions.  In reality this couldn’t be further from the truth.  Most of my time is spent either writing, or helping other patients online.  Most of these people think that spending time online must make me feel worse, when in reality the opposite is true.  Helping others gives me purpose and keeps me concentrating on everything but my pain, so I can often be found even working while in bed in the dark, iPad on my lap.  I stop for the day only when a Migraine is completely out of control. 

A few relatives think I waste my time each day in front of a television eating bonbons.  I wouldn’t know a bonbon if it stood up and introduced itself to me.  Although a radio or the television is often on for background noise to drown out my tinnitus (ringing ears) I rarely watch TV unless I happen to be passing through the room at an especially interesting time.  I average approximately 12 hrs a day working as an educator/advocate.  It’s true that part of this time is my job.  However, the vast majority of it is volunteer.  Patients are my priority.  Even with those numbers, I still feel that I let some patients down because there just aren’t enough hours in the day.  I do my best and hope they see that.

A few friends and relatives think I waste my time on useless or frivolous sights such as Facebook and they see no purpose in it.  The reality is that I visit many online social media platforms, participating in too many of them to really count.  Sometimes I ask questions myself because I am always learning, but usually my time is spent helping others who are asking questions or looking for support.  I also keep in touch with other patients through these social media platforms, and we are often found sharing prayer requests and comfort for each other.  Hardly a waste of time in my book. 

I take my meds when I’m supposed to.  I distract myself from my pain every day.  I take out a little time each day to concentrate on things that cause me to pause with wonder and smile.  I enjoy the time I spend with my dogs and cat, and although my heart aches for the interaction, I enjoy watching the daily activities of the horses that surround my home.  I plan to go somewhere at least once a week because this makes me feel like my life is a little more regular.  I struggle to be as normal as I possibly can, with a very *not normal* situation. 

It’s my fault that my family and friends aren’t more aware of how I spend my days as a Migraineur because I could just talk about what I do and how I spend my time, but nobody is asking questions and I don’t feel the need to sit them down and bore them with the details.  I think they don’t ask questions because the reality is that they don’t want to know the answers.  They know I live in pain and that makes them feel uncomfortable.  They don’t know how to talk to me anymore.  Mostly, they are uninterested and busy with their own lives.  That happens with all of us from time to time.

My hubs and kids know how I spend my time because they live (or used to) with me each day.  My kids are Migraineurs too, so they understand from that perspective.  My world became very small when I got sick and that’s okay.  It’s okay that they are the only ones who “get me”  because they are the ones who matter most.  And the most important part of this equation is I am blessed that they DO understand and know me, and I am not alone.

 

~Ellen


Migraine Awareness Month #5: "Do That To Me One More Time."

AwarenessMonth2012BC2Today's prompt for the National Migraine Awareness Month Blog Challenge is:

Migraine Awareness Month #5  What comfort measure do you find helps you enough during a Migraine that you go back to it again and again, and how do you use it?

My go-to comfort item that gets me through Migraine attack after Migraine attack, is my heating pad.

I have often joked that my heating pad needs a name, because I cuddle with it more than my husband.  (Sadly, hubs agrees with me, lol) It goes nearly everywhere with me.

When I asked my doctors why heat is so helpful to me, nobody seems to have an answer.  Since I tend to suffer from inflammation one would think heat might aggravate the situation.  However, when I’m in pain I do tend to find it difficult to argue with success.

Placement of my heating buddy has everything to do with its success. 

In my case, I get a pain trifecta: Migraine (usually my left side) with extreme pain behind my eye, and trigeminal neuralgia that shoots across my face, eyeball and inside my ear like lightning while at the same time throbbing like the worst tooth/face ache you can imagine, radiating down the front of the left side of my neck.

I usually put my heating pad directly onto my face, even putting it over my pillow so I can lay on it, pain side down.  If tension is a problem in my neck, I have the larger sized pad that easily wraps around the back of my head for comfort there as well.

Thankfully it turns off automatically and I have never suffered any burns from it, however I do know of someone in the Migraine community at large that had an old model without the automatic shut off.  She took her meds, fell asleep on it and woke up with 3rd degree burns. 

There are times when even my heating pad isn’t sufficient.  I usually retreat into my hot pounding shower then.  I’m never quite sure if it is the heat itself that is so soothing, or the distraction of the hot pounding water over my bruised body that seems to help.  (Hurts so good?) Again, it’s tough to argue with success.  At the very least, the cooling down process after the shower allows my body to relax and sometimes fall asleep (often with my heating buddy wrapped comfortably around my face and head) when intense pain of an especially brutal attack usually makes rest impossible.

Do you find heat or cold to be more comfortable during an attack?  Do you find that changes from one Migraine attack to another?

What is your favorite comfort item?

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

To help raise awareness about Migraine, please Tweet this post with the hash tags #NMAM and #NMAMBC and share it on your Facebook page. Thank you!

Ellen


January Migraine Blog Carnival - Migraine Management in 2012

BlogCarnival125 Welcome to the January, 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 "What will you do differently to better manage your Migraines in 2012?," and it's hosted by Diana on Somebody Heal Me.

Check out this month's great collection of blogs in Migraine Management in 2012: January Headache & Migraine Disease Blog Carnival.

Live well,


 

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Last updated January 16, 2012.