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This is my journal of living with Migraine and other chronic illness. Trying to live well, to live a purposeful life, with chronic illness, since I don't get the choice of living one without it!

Physical Therapy (Again) – This Time for Migraine

July 29th, 2008

Past results not a guarantee of future performance.

I had my first physical therapy appointment yesterday, prescribed by Dr. Gerhardstein, my new headache specialist, as I discussed in Update on my Headache Specialist Visit.   The idea is to release tension in my neck and retrain me to loosen those muscles, and avoid straining them.  As I understand it, neck pain and tension lead to tension headaches.  The muscles in the neck connect directly with the fascia over the skull, so tension in the neck muscles will lead to tightening of the fascia, leading to that tightening-all-over-the-head pain of tension headaches.  Since my tension headaches almost always morph into Migraines, this should help reduce that trigger.

I took my first yoga class at 15, going along with my mother to the local Y, and I was proud of how flexible I was compared to the 30, 40 and 50ish women in the class.  Now I’m that 40-50ish woman and I’m not so flexible.  The physical therapist (who is about my age, I’d guess) must have said “at your age” at least 4 times in the course of a 45 minute session.  “Your posture is not too bad for your age.” “It’s common to have that kind of limited range of motion at your age.”  (And the one that really killed me) “You might still be able to tighten up those abdominals at your age.”

My mother always corrected my posture as a child and a teen, but when I went to college I took and then taught women’s self-defense classes.  I learned to stand tall, strong, and proud.  After my pregnancies I worked hard on tightening those abdominals back up.  It is a rude awakening that I’m slumping even a little, at my age!  I had to laugh at myself – she said she was going to assess my posture, I stood up straight (I thought) and prepared to receive my A+ and she said my posture was “not too bad,” and that my abdominals were weak.  Not too bad?  She might as well have given me an F!

Don’t get me wrong, I really liked her.  She applied moist heat and a TENS (Transcutaneous Electrical Nerve Stimulation) unit, then ultra-sound, then a gentle (Ahh!) neck massage.  Since the session yesterday I have been hyper aware of my posture.  Each time I go through a doorway I true myself up – ears over shoulders, head held high, abdominals in.  I did the yoga exercises she gave me before bed and the neck stretches in the shower.  I’m looking forward to my next appointment, later in the week.

Here’s what the rude awakening is.  The fact that I did yoga regularly as a teen and on and off in my twenties and thirties will not help me now.  The fact that I know how to have good posture, how to relax my neck, how to exercise my abdominals, none of that is the same as doing it, now.  The physical therapist doesn’t see the woman who did all that great stuff decades ago.  She sees the woman with chronic pain and stiffness in her neck.  She sees the limited range of motion, and treats that.  Thank goodness!  Being a teacher’s pet will not help me here!  Having been a straight A student has no relevance!  This is about a daily practice to help me live better and feel better, now.  In my 49 (and a Half!!!) year old body, not the 15 or 25 or 35 year old one I once had.

I wanted you to know about PT as an option for helping with Migraine.  I also wanted to remind myself, and you, to live now, in this day, in this body (the one you’re in).  Bring peace to this day.  Bring healing to this day.  And there is hope for those abdominals yet!

– Megan

Model of the head image copyright 1995 Buyamag Inc., yoga stretch image courtesy of Bandita.

Tags: flexibility, migraine, physical therapy, posture, TENS, tension headaches, yoga
Posted in Managing, Medicine, Rant | Comments (1)

From the Lake to You – Great Migraine Reading

July 24th, 2008

This is where I am now as I write you.  A beautiful lake in the mountains, where I come every year with a group of friends and extended family, and hike, swim, kayak, and rock on rocking chairs on a  big porch overlooking the lake.  So why am I writing now?  For one thing, it’s been pouring much of the week!  For another, I spent yesterday in my room with a migraine.  A friend posted this link to a Scientific American article on Migraine disease, and I wanted to share it.  She called herself a nerd for having a Scientific American subscription; I guess that makes me a real Migraine Geek for choosing this for my vacation reading!  But it’s really fascinating!

Here’s the link to the article, which explains and summarizes new research into how migraines actually start in the brain and central nervous system: Why Migraines Strike. It’s a long article, but well worth reading
to better understand what is going on in our brains, and new possibilities for treatment. I think the most important point, made by the authors in the last paragraph, is that the evidence is overwhelming that this is a real, congenital disease, a significant difference in brain function. Wave this article in the face of those who still won’t believe Migraine is a disease! A few points that really struck me:

• There is strong evidence suggesting that the tendency to Migraine is genetic, but there are a number of different genes involved, and the same genes are not involved for every migraineur. This may provide some explanation of the wide variety of symptoms experienced by different migraineurs and the variance in effectiveness of treatments from one person to another.
• The differences between migraine with and without aura may be explained by a phenomenon called cortical spreading depression, an abnormal kind of neuronal activity, which moves across the brain like a storm, affecting visual centers in some, motor centers in others, and perhaps even explaining the irritability, sleepiness and brain-fog experienced by those without aura, as the brain centers involved come under the “storm.”  Thus the pro-drome symptoms experienced by those of us without aura may be another kind of aura!
• Triptan drugs, which constrict blood vessels (which is why they are contraindicated for many with heart conditions or high blood pressure), were created when the prevailing theory of the cause of Migraine was vascular.  Luckily, they also inhibit the neuronal activity which is the actual culprit!  However, the new understandings of Migraine as a neurological condition makes development of newer, more specific abortive drugs possible, and several are under development.

Read the article and let me know what you think.  A few of my non-migraineur friends and relations up here even found it interesting.  More fodder for helping others – and ourselves – understand!

See you!  I’ll be heading out on the lake – as soon as it stops raining!

– Megan

Tags: cortical spreading depression, genetics, migraine aura, Migraine disease, Scientific American, vacation
Posted in Medicine, Science | Comments (2)

Handling Migraine Challenges: Helping Others Understand

July 19th, 2008

I’ve been asking e-course subscribers* what they find to be the biggest challenge in managing their Migraines.  Many of you have responded.  While I’ve written individually to everyone who responded, we all have so much in common that I wanted to share some of what I’ve gathered from your responses.  This is kind of Megan’s Dear Abby for Migraineurs.

We all know that we are challenged in many ways by Migraine disease, but the majority of subscribers included something along the lines of “helping others understand.”  How do we help others, the non-migraineurs who are important in our lives, to understand our disease, how it effects us, what we can and can’t do about it, and how it will effect them?

In reading all your responses, I see two issues in helping people understand.

The first is coping with those who judge us.  “Oh it’s just a headache she’s being a baby.”  “Oh so you have another of your little headaches?”  “Why do you always have a Migraine when I need you to do something?”

People have all kinds of reasons for judging.  Sometimes they want to feel superior.  They may want to distance themselves from you, your problems, your pain.  It’s almost a superstition at times; if they don’t sympathize, if they don’t believe in your pain, they can pretend it has nothing to do with them, that nothing like this can ever happen to them.  Some disability advocates refer to the non-disabled as “TABs” – standing for Temporarily Able-Bodied.  A potent reminder that disease and disability can happen to any one of us.

What can we do with those trying to feel superior?  We can think of nasty responses to put them in their place, and that can be a fun exercise when we’re angry.  The only thing I think is really effective is to speak our truth – tell the truth about what it’s like for us.  Some of those people will hear.  Some of it will sink in.  This is more about Coming Out of the Migraine Closet.  And if these people are not important to us, how much do we really need to do?  We can choose how far, and when, we want to be advocates, and we can recognize that not everyone will understand us, not everyone will be our best friend.  The job of advocacy takes a long time, and while I believe in educating people, it’s okay not to face down every single person every single time.

When important people judge us, the people that matter in our lives, I believe they do it out of pain.  There is the pain of what they lose to Migraine disease.  Our companionship, having fun with us, our help, our ideas, our input.  Our work and productivity.  There is the pain of seeing us in pain.  Of wanting to help. Particularly in the case of parents and life partners, there is the pain of wanting to be able to fix it, make
it all better, make it go away.  The pain of their powerlessness in the face of this disease.  When we can’t face pain, or understand it. we look for someone or something to blame.  “Why can’t you take better care of yourself?”  “It’s all in your head.”  “You have to learn not to stress out.”

The answer is in communication.   If people care about us, it’s worth doing whatever it takes to help them understand.  To sit down, at a time when no one is upset, and tell them what it’s like for us.  Give them information they may not have about this disease.  Teri Robert has a great resource, Understanding Migraine Disease and Migraineurs, which is a letter you can give to those who don’t understand.

But this brings us to the second issue, which I suspect is actually a bigger issue than what the others think.  First, before we can ask them to understand, we have to understand ourselves.  I think this may be the biggest ongoing challenge.  We have to understand, and accept, that we have a disease.  We didn’t choose it.  We didn’t cause it.  We may be scared, confused, upset, frustrated, worn down and in pain.  But we are not lazy, we are not malingering and we are not making it up.

Even more of you wrote about your worries about effecting others than about actual judgment from others.   “Feeling like I’m a burden on my family.”  “This disease affects everybody around me and it’s not fair. Neither for me nor for the others.”  “Having to stay in bed and my hubby having to take over.”  “I want my clients to be able to depend on me but sometimes I cannot be there and that really bothers me.”

We want to be useful, to be helping and participating with those we care about.  The first thing we have to do is to accept that we have a disease that will interrupt our lives, take us out of the action, make us rely on others.  Inside of acceptance, we can begin to see how we can help, what we can do.  Inside of understanding, we have options.

– Megan Oltman

*The Six Keys to Manage your Migraines and Take Back your Life – sign up for this free e-course in the upper right corner of this page.

Writing pen image courtesy of Toshiyuki IMAI; pointing finger image courtesy of Lisamarie Babik.

Tags: acceptance, disability, e-course, Migraine disease
Posted in Advocacy, Communicating, Managing | Comments (5)

Silly Headache Rhymes

July 16th, 2008

In honor of the brilliantly funny Migraine Chick who periodically brings us her Bad Migraine Haiku, and maybe just because I am fundamentally a silly person, I bring you installment One of Silly Headache Rhymes:

My head is not too spiffy,
it’s really kinda iffy,
I’d trade it in a jiffy
if I had an extra head!

– Megan Oltman

Two-headed image courtesy of 1024greenstreet.

Tags: headache, migraine, poetry
Posted in Silliness | Comments (2)

Migraine and Headache Blog Carnival: How Spirituality Helps us Cope with Migraines

July 14th, 2008

July Headache Blog Carnival – How Spirituality Helps Us Cope with Migraine
Disease

Hop on over and read the great entries in the July Headache & Migraine Blog Carnival, at Somebody Heal Me.

You will find a variety of posts directly on that theme, and more on other themes related to migraine, pain and our heads.

Generally speaking, a blog carnival is a collection of links to a variety of a
blogs on a central topic. The Headache & Migraine Disease Blog Carnival has
been created to provide both headache and migraine disease patients and people who blog about headache disorders with unique opportunities to share ideas on topics of particular interest and importance to us. Visit the link to this month’s carnival for a collection of informative entries on how spirituality helps us cope with migraines and headaches.

Look for the August 2008 Headache Blog Carnival on the theme of “How You Handle People Who Don’t ‘Get’
Migraine Disease“ at Somebody Heal Me on Monday, August 11th. They may be submitted through the form on the carnival website or directly to Diana Lee by e-mail.

Entries are due by midnight (the end of the day) on Friday, August 8th.

– Megan

Tags: headaches, migraine, spirituality, Weblogs
Posted in Religion, Weblogs | Comments (0)

Update on my Headache Specialist Visit

July 13th, 2008

If you’ve been wondering, I do think all the preparation I did paid off.  I met with my new headache specialist for over an hour on Tuesday, and I liked him.  He seems knowledgeable, up on current research, is respectful, takes his time, listens, answers questions.

He took a little over an hour with me. He is starting up the headache center for UMDMJ (University of Medicine & Dentistry of NJ) and RWJ (Robert Wood Johnson) University Hospital. The center has been open
less than a year. Right now he spends half his time with general neurology patients while they build the headache & Migraine practice. He plans to do headache medicine exclusively and wants to have an iv center here eventually. He said about 80% of his HA patients have chronic daily headache or transformed migraine. He is very concerned about preventing chronic pain in someone like me who hasn’t developed it yet.

Some very good news for me – when I talked about an emergency plan, he said to come to the ER at RWJ. They will contact him or the neurologist on call and will have my chart and a protocol for me. It’s about 15 minutes further to this ER as opposed to 20 to my nearest one, but I can cope with that. It’s a huge load off my mind to have an emergency plan.

We talked about preventives – he gave me the choice of starting them now or giving it a few months to see if my current success holds (2 mild migraines last month – see my post on Recent Success). I decided
to wait. He wants me to continue exercising every day, get 8 – 10 hours of sleep per night, and he wants me to add physical therapy for neck-strengthening exercises and get neck massages. If the headaches

increase again I can call him and he will start me on preventives. I will be seeing him again in mid-September.  I’m planning to do a lot of reading up on medication options before that time. Other issues – he wants me to get an ENG to test whether my vertigo is positional vertigo or Migraine related (MAV). He thinks from my description it is probably positional and they can correct that in the office. If it’s MAV
triptans could be a problem so I hope I don’t have it. My medication options are so limited already I sure don’t want them limited further!

He would also like me to do a challenge test with aspirin – I’ve talked to my primary physician about doing that in his office. (For those of you not familiar with my saga, I have a life-threatening allergy to ibuprofen, and that is in the same drug family as aspirin, naprosyn, all the other nsaids.) This is an allergy challenge test – to see if I react to the drug. The
staff would be standing by to save me if I have a reaction. The idea makes me very nervous. But if I am not allergic to aspirin it expands medication choices quite a lot. I need to think hard about whether I am willing to take that risk. He’d like to be able to give me naprosyn for when I can’t use a triptan – he also says because it’s longer acting
it’s less likely to cause rebound headaches than the triptans.

I left his office and developed a 2 day migraine – I think the drive and parking in the blazing hot sun did me in.  But I’m happy to have a good doctor on my team!  Since the appointment I have scheduled physical therapy, called to schedule an ENG, and ordered prescription sunglasses to deal with the summer sun.  I hope I’m on a roll!

– Megan

Hospital image ©2008 Robert Wood Johnson University Hospital, aspirin image courtesy of Ritcharnd Moskow.

Tags: allergy challenge test, headache center, headache specialist, migraine associated vertigo
Posted in Managing, Medicine | Comments (1)

God Grant me the Serenity to Accept the Migraines I Cannot Change

July 11th, 2008

I try to live by the serenity prayer:

God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.

This simple prayer has seen me through family issues, recovery from major illness, life crisis and transitions, grief, job loss, financial difficulty.  It is the mantra I repeat as the pain takes over my head, as I wait for my meds to work, as I practice deep breathing to relax my mind and body.  It keeps me focussed where I need to be, in knowing what I can change and what I can’t, not wasting my energy where I cannot change something, not sitting in useless despair when there is something I can do.  It also keeps me in the moment.  I cannot change anything in the past.  I can only change the future by taking the next right action to lead me where I want to go, not by wishing, hoping, fantasizing or sitting immobilized in fear.

There’s no way for me to write a post about spirituality without talking about what I believe, which is deeply personal and which I rarely discuss.  I grew up with a Jewish mother (from a not very religious family) and a father who was the son of Presbyterian missionaries, celebrated holidays from both religions but was raised pretty much as an atheist, and then became a Quaker (along with most of my family) as a teenager.  Spirituality and faith may never be a simple matter for me.  I don’t consider myself a religious person, but I am a spiritual person.

There’s no way to write a post about spirituality, I think, without turning some of you off.  Some may already be turned off by the use of the word “God.”  Some were turned off by my description of my unusual religious background.  Some will be excited by it and see it as an opportunity to convert me.  Please resist that temptation!  Some will be turned off in a moment when I tell you that I consider myself to be a faithful agnostic.  What does that mean?   I have faith in a power greater than myself, in a power for good, the power of love, a power that unites people, incites altruism, brings us to care for more than our own selfish interests, “that of God in every man.”  I believe there is more out there than we can see, perceive or know in any scientific sense.  But I’m… blessed if I know what it is!  I don’t even think it’s important for me to know what it is!
How does this help me with Migraine disease?  I don’t go down the road of “God gave me Migraines for a reason.”  Whatever else I believe, I can’t get behind the idea of a God who causes suffering, for any reason.  I think more that we live in this gloriously complex world where we have sunsets and earthquakes, roses and poison ivy, kittens and sharks, senses of humor and migraines.   It’s a complex system that somehow all works together, and we are part of it, warts and all.  Migraines and all.

I do believe, though, in my God, my higher power, as a comforter.  As the force of love, of good.  To help me through pain, to help me remember that I am not the pain, that I am more than the disease, that I am here to help others, to make the world better.  Sometimes in the midst of a migraine, I have a moment of feeling like this is all there is, no world exists outside the pain.  I say the serenity prayer.  It reminds me that there is more.  That I am more.  That another day will dawn when I am without pain and can get on with living.  That the beauty of the world is still there waiting.  I do think it takes faith to live with Migraine disease.  Ridiculous faith and unconquerable hope.  I am amazed by the ridiculous faith and unconquerable hope I see in my fellow migraineurs.  And I find serenity there too.

– Megan
Wishing you serenity and freedom from pain

Tags: faith, Migraine disease, pain, serenity prayer, spirituality
Posted in Managing, Musings, Religion | Comments (8)

Believing in Ghosts

July 11th, 2008

The problem with pain, aside from the fact that it hurts, is that you never get used to it.  And then there’s that other problem, that the purpose of pain is to let you know there’s something wrong, so you can take your hand out of the flame.  But what’s the purpose of migraine pain?  To let us know that our neurons are going haywire?  Oh, how useful!  Since they’re going to do their haywire thing whether we know it or not.  And then the other problem, of course, is that it hurts. I know, I already said that.  But did I mention that it Hurts?

I love my Migraine-free time.  Sometimes I worry that I don’t love it enough, that I don’t remember to love it every minute.  Then the pain takes me by surprise when it comes back.  It feels like such a betrayal.  How could this be happening, again, when I’ve been so good, well, mostly, well I’ve tried to be…

I had 4 weeks with two mild migraines.  Went off to the migraine specialist saying “I’ve just had the best month in about 7 months – kind of like when you take the car to the mechanic it stops making the noise!” Kine-ahora!   (That’s Yiddish for… kind of like knock wood… ward off the evil eye.)   So on the way home from the migraine specialist what do I get?  You guessed it!  I ended up with a two day temple-gouger this time.  Pain like I haven’t felt in, well, a month?

When I was little I used to have scary dreams with ghosts.  If I said (in the dream), that I didn’t believe in ghosts, the ghosts would throw me up in the air or bounce me up and down or do something to prove they were real. I feel a little like that with the Migraine I just had – like I’m going along saying how well I’m doing and the beast has to jump out and bounce me up and down to prove it’s real. All right, already, I believe!

Who knows?  I don’t like the nasty surprise of the pain, but maybe it’s better than remembering it all the time.  Better to live completely in my wellness, rather than still in the Migraine.  I felt well today.  For which I am exceedingly grateful.  I hope you did too.

– Megan

Neurons image courtesy of Rebecca Radcliff; ghost image courtesy of piccadillywilson.

Tags: Migraine pain
Posted in Rant | Comments (6)

Exercise and Migraine Prevention: Take Two

July 10th, 2008

I promised to get you some more evidence to answer the question: Does exercise aid in Migraine prevention?  And in the interim, this news cropped up:  The Journal Headache recently published a review of eight studies and four case reports of exercise as migraine therapy.  Dr. Volker Busch of the University of Regensburg, Germany, reviewed the studies, and found that

“most studies did not find a significant reduction of headache attacks or duration due to regular exercise. Six of the studies demonstrated a reduction of pain intensity during the intervention.”

Read full coverage at My Migraine Connection.  Please note, though, that the answer is not “No.”  The answer Dr. Busch’s review provides is that: 1) in the studies reviewed, there was not a significant reduction in number or duration of migraines; and 2) there is not yet sufficient evidence to state with certainty whether or not exercise helps.

Does this mean we give up on exercise?  No!  I gave you my little piece of anecdotal evidence a few weeks ago in the post Exercise for Migraine Prevention.  My update since that time?  I have exercised 27 of the last 30 days.  I have had 3 migraines in that time.  Contrast that with an average of 6.5 migraines per month for the last 7 months, with sporadic exercise.  It’s not scientific evidence of anything, mind you.  All I can tell you is that exercise is making me feel good!

What does exercise do for us?

• Exercise releases endorphins, which are our body’s own pain-killers.
• Exercise relaxes our muscles – it reduces muscular tension.
• Exercise reduces our general fatigue and helps us sleep better.
• Exercise tones our blood vessels and increases blood flow.
• Exercise reduces anxiety levels and increases relaxation.
• And then there’s all that stuff about a healthy heart, a healthy weight, regulating our blood sugar, just the general things that keep us alive!

Read more on the benefits of exercise from migraine blogger James Cottrill at Relieve-Migraine-Headache.

It stands to reason, I believe, that exercise might reduce migraine frequency or severity.  I can’t promise you, of course, that it will do that for you.  Migraine is, among other things, an outcome of a sensitive, highly reactive nervous system.  Whatever we can do that makes us stronger, healthier, more relaxed, more stress-hardy, ought to make our systems less reactive.

Most of us are also aware of the problem of exercise-generated migraines.  The key is to take it slow and gentle.  A couple of great articles on how to work in some exercise without setting off migraine are Teri Robert’s 10 Ways for Migraineurs to Sneak in Some Exercise, and Ellen Schnakenburg’s Moving and Exercising and Migraine.  Also remember to drink lots of water and avoid hot sun if it’s a problem for you.

I don’t have medical studies to back me up here!  But medicine is art as well as science, and I’ll tell you that all my doctors are telling me I need to get regular exercise!  So don’t let “it’s not proven” mean “why bother?”

– Megan
Breezy, clear, sun getting lower – time for a walk!

What does that sailboat image have to do with it?  That was my daughter’s first solo sail – she was getting some great exercise!

Tags: endorphins, exercise, migraine prevention, vascular health
Posted in Managing, Medicine, Tips & Techniques | Comments (7)

July Migraine and Headache Blog Carnival on Spirituality – Deadline Tomorrow

July 10th, 2008

JULY HEADACHE & MIGRAINE DISEASE BLOG CARNIVAL

Don’t forget to submit your entries for the July Headache & Migraine Blog Carnival, which is being hosted at Somebody Heal Me.

The July theme is “How Spirituality Helps Us Cope with Migraines.” Entries on any topic that is particularly interesting, educational or inspirational for headache & migraine sufferers are also welcome. Your blog need not be limited to the topic of headaches and migraines to participate. If you have relevant posts to share, you’re encouraged pass them along.

Entries are due at midnight on Friday, July 11th. They may be submitted through the form on the carnival website or directly to Diana by e-mail.

The carnival will be published on Somebody Heal Me on Monday, July 14th.

If you would like to be added to Diana’s carnival mailing list to receive updates and reminders or are interested in hosting a future edition, please send Diana an e-mail at somebodyhealme@dianalee.net.

– Megan

Tags: blog carnival, headaches, Migraine disease, spirituality
Posted in Weblogs | Comments (0)