Free my Brain from Migraine Pain

What are you complaining For?

Hi there - Happy Easter to all who celebrate it. I am up and walking around on a beautiful, chilly, early spring day, with bulbs poking their green noses out of the dirt (and a few, their bright flowers.) I am headache free for the first time in 5 days and enjoying a lovely family visit. I really don't feel in the least like complaining. But I thought about it a lot while I lay in bed this past week with sinus Martians and Migraine beasts fighting for control of my head. (They both won.)

Some folks just don't like to complain. That preference is generally seen as virtuous, stoical (for which read, a good thing) and considerate. Hazel Reese's autobiography, a tale of a life with chronic illness, is entitled I Will not Complain. I don't intend to take anything away from the non-complainers, they have my reluctant admiration. You may have guessed that I myself do not often rank among their numbers. I do think there are several ways to look at, and use, the practice of complaining, or not complaining.

What are you complaining for? I mean what is the point of complaining? Actually there can be several points. The complaining we don't like, the kind we, well, complain about, is the complaining that has no purpose other than to make us feel sorry for the complainer. Whining. Whinging. We don't want to go visit Aunt Sue or we're hardly friends with Bill anymore because all she/he does is whine. Taking it down a level, what we're really objecting to is an evasion of responsibility. If only you knew how bad it was for me, you wouldn't expect so much of me. If only you understood, you would take all these burdens from my shoulders.

There are several other reasons to complain, though, which are perfectly responsible, even virtuous. We can complain to get it off our chests, what we coaches sometimes call clearing. When I sit down to a coaching session with a client we usually spend a few minutes noticing if anything is getting in the way of our ability to be fully focused in the present - and if something is, we name it so we can put it aside. "I'm feeling sad about..., I'm upset by..., I've been angry about..." Those emotions keep on operating in the background and color the way we think and what we see as possible, if we don't give them voice, whether we write them down or share them with someone who will help us clear our minds.

And then there's complaining to get results, to make change, to change history. Most of us have seen the bumper sticker "Well-behaved women rarely make history." Any social change worth mentioning has happened with a great deal of powerful committed complaining. Public opinion does not change without an awakening of empathy. You can awaken empathy by complaining, by making sure someone else really  gets it, really understands your world. I'm thinking about the ADA (Americans with Disabilities Act), which took a great deal of powerful committed complaining. For those of us with invisible illness, with Migraine Disease and the other chronic icks that have people saying "but you don't look sick...", it might not be a bad idea to complain more. Not like Bill and Aunt Sue, like the ADA advocates.

Try these: "I don't look sick, but I feel like there's a squirrel with a chain-saw in my head" (thanks Migraine Chick!); "Oh yes, I'd be fine, if only they'd stop trying to remove my brain with a grapefruit spoon" (that was me for the last week). Or a more sincere heart to heart with the non-migraineur of your choice, asking him/her to support the AHDA (Alliance for Headache Disorders Advocacy) efforts to get a fair share of NIH funding for headache disorders!

"Never doubt that a small group of thoughtful, committed people can change the world. Indeed, it is the only thing that ever has." Margaret Mead

- Megan Oltman

Gripe, gripe, gripe!

                                                     easter egg photo courtesy of adobemac

                                                     spring bulbs photo courtesy of view of the world

                                                     hyacinth photo courtesy of B~

Not a Happy Camper

I'm not really even up to a rant.  The nasty sinus infection has spawned several days of set my teeth on edge migraines.  Then today my computer died, taking several power cords down with it.  Conspiracy?  You could only call me a grumpy camper right about now.  I will write you all a nice juicy post as soon as things clear up in my brain and my world.  Can't be long now!  Right?

- Megan

Please feel well - someone has to!

The Weather Report inside my head (Sinus and Migraine locked in competition)

Sniffly with a chance of coughing?  Yesterday's migraine has transitioned into today's sinus infection.  You don't really want to hear about the nasty greenish glop going down the back of my throat!  I seem to have two major weather systems duking it out in here.

I'm going to try to make sense here, but the brain is not quite up to par today, so no promises.  It's hard to think with stuff pressing on the brain - whether that's from the inflamed blood vessels of a migraine or from blocked up sinus cavities. 

I've been wondering for some time about the sinus/migraine connection.  In a thought-provoking article, Sinuses giving you a headache?  It's probably Migraine! Teri Robert tells us that " nearly 9 in 10 people with sinus headache symptoms likely are suffering from Migraines," and Migraine not only causes pain in the sinus area, but can lead to nasal congestion as well! According to a research study  presented in 2004 at the 46th Annual Scientific Meeting of the American Headache Society (AHS), "real" sinus headache is only present when there is a sinus infection, which typically involves fever, lots of green or yellow mucus, and swollen lymph nodes.

I have to say, as one who has clear and obvious Migraines, (pounding pain in one or both temples, with extreme light and sound sensitivity) and clear and obvious sinus infections (with the green glop of doom, swollen glands and fever), the study raises as many questions as it answers.  To quote Teri Robert further:

Ironically, researchers believe a few of the people in the study may have acquired sinus infections as a result of having a Migraine. Lengthy Migraine attacks can lead to swollen nasal membranes and closed off sinus passages, creating the perfect environment for an infection, said Dr. Eross.

I had one neurologist (not a headache specialist) tell me my sinus problems are probably Migraine.  Without asking any further questions about my history, it sounds like he read the research, but I don't think he was giving me useful information.  I don't generally have those suspect sinus "headaches," I have months of recurrent infection symptoms.

This is the essential chicken and egg dilemma.  Do my Migraines lead to sinus infections? Does the pressure and swelling of infection trigger Migraines?  Both look likely from my own history.  My internist is intrigued by the question but has no answer for me.  I've got my hopes pinned on the headache specialist appointment in June.   What difference does it make?   If I can work out a good preventive regimen for either ailment, I'd love to have it help both!

In the meantime, I try to live in the way that will best take care of both the sinuses and the Migraine brain, which for me involves avoiding dairy, keeping my supplements up (including magnesium and B for the head and C and zinc for the immune system), eating in a way that takes care of my gut (high fiber, not a lot of processed foods, using a pro-biotic supplement), keeping my nasal passages moist with a neti pot and saline spray, and using relaxation to keep the ole brain calm cool and collected (more or less).

Megan Oltman

Free my Brain from Migraine Pain, Free my Head from Sinus Dread?

                                                    Vitamin photo courtesy of DRB62/Daniel R. Blume

                                                    Gargoyle photo courtesy of ClatieK/Katie Claypoole

What can I do with my hair?

A frivolous topic, I know.  Can you tell I'm laying around in post-drome, not quite well enough to be up and doing but well enough to be bored?  This is dangerously close to a self-indulgent pop culture style mag question, but please indulge me!  When you're a red head you spend your whole life with people commenting on your hair, so I guess it becomes an obsession.  What is the right hair length for a migraineur?  Is there such a thing?

The photo I most often use professionally and for an avatar online is about 4 years old.  I'm going to have to change it soon for a more recent one.  But lots of my online friends know me looking like this: 

Now it's not that I don't look like this, but I grew my hair out over the past 3 years and now it's quite long, almost as long as when I was a hippy-dippy teenager!  I also stopped coloring my hair, at least for now, I've got white wings on the red at the sides.  Hey if it's good enough for Bonnie Raitt, it's good enough for me!  The problem is, my hair weighs a ton!  And it's hot on my neck.  I like to wear it up, or braided, or back, in hot weather.  But if I have a migraine, or I'm in post-drome, my scalp is tender and I can't stand the pressure of putting it up.  Even the weight of it pulling on my scalp when it's down makes me nuts.

So now I look like this (a not very great picture of me last spring break) but my hair has gotten even longer.  I hate to chop it all off again after spending 3 years growing it back.  I'm also pushing 50 here and I'm not sure the face holds up to a short haircut any more!

So, what's a migraineur to do?  I don't want this disease to dictate anything else in my life!  But days Iike today I sure want to chop it all off.  It hurts to even think about washing it. 

Please leave a comment and let me know how you deal with your hair! 

Megan Oltman

Migraineur Fashion Central?

By the way, Mom says I should cut it!

Please support help for our heads!

Here is the text of a letter sent Tuesday of this week to all of us on the AHDA (Alliance for Headache Disorders Advocacy) mailing list.  The time is now to contact your congressperson and urge him/her to support more research funding for headache disorders.  The ADHA link below makes it very easy to do.  Please help NOW.

Dear AHDA advocates -

Well, the key moment has arrived for you to contact your Member of the US House of Representatives to take action for increasing NIH research for headache disorders.

A Dear Colleague letter was sent yesterday by Representatives Peter Welch and James Moran to all House offices, urging all Members of the House to co-sign a letter to Representatives David Obey and James Walsh. The Obey/Walsh letter requests inclusion of language that supports headache research to be appended to the FY09 appropriations bill for NIH. (For details, see the letter and attachments at the AHDA site.)

The more Representatives that co-sign the Obey/Walsh letter, the greater are the chances that the language will be included. The Obey/Walsh letter must be submitted with signatures by 3/19. This unfortunate deadline was a late-breaking surprise for us, so we have little more than a week to get as many signatures as possible. Please go to the AHDA website as soon as possible to contact your Representative and urge her/him to co-sign the Obey/Walsh letter now.

http://www.allianceforheadacheadvocacy.org/

Blessings upon your heads!
- Megan Oltman

March Headache Blog Carnival - Maintaining Friendships for Those With Migraines and Headaches

Be sure to check out the March Headache Blog Carnival - up now on My Migraine Connection!

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 thoughtful entries on negotiating friendships that are so often impacted by headaches and migraine disease.

Thanks so much for hosting, Teri!

- Megan

Botox for Migraine Treatment - News?

In today's London Daily Mail, reporter Theresa Devereux raises the question:  Can botox injections poison your body?   According to Devereux, this question was studied by Dr. Walter Herzog of the University of Calgary, Alberta, who found that the toxins in botox may not stay localized in the muscles into which they are injected.  The abstract of the research by Dr. Herzog, M. Yaraskavitch & T. Leonard, published on January 9, 2008, can be found in the Journal of Biomechanics here. Dr. Herzog et al studied the effect of botox injections in cats and concluded that the injections caused measurable weakness in neighboring muscle groups.

Read the entire Daily Mail article here. 

The US Food & Drug Adminstration (FDA) has been investigating reports of severe side effects from some medical uses of botox, and conducting their safety review, for some time.  It is not clear to me whether the results of Dr. Herzog's study add anything new. 

Given that botox is based on the toxin botulinum, which causes muscle paralysis, if it spreads beyond the injection site into other muscles, the consequences could be serious.  Devereux states:

The FDA is not advising doctors to stop prescribing the drug, but they are conducting a safety review and say the reactions may be due to overdosing.  However, they are warning patients that they should receive immediate medical attention if they have worsening or unexpected difficulty in swallowing or talking, trouble breathing or muscle weakness following any injection of Botox.

The dangers appear to be acknowledged in the Botox labeling.  Migraine Blog reported on February 8, 2008, that:

The Warnings sections of the labeling for both botulinum toxin products note that important systemic adverse effects, including severe difficulty swallowing and difficulty breathing have occurred in patients with neuromuscular disorders after local injection of typical doses of botulinum toxin.  FDA now has evidence that similar, potentially life-threatening systemic toxicity from the use of botulinum toxin products can also result after local injection in patients with other underlying conditions such as those with cerebral palsy associated limb spasticity. Systemic toxicity has been reported in children, several of whom required feeding tubes and/or ventilation (breathing) support.

Migraineurs please read the research, and follow up with your doctor if you have any concerns.

- Megan Oltman

                                                    hypodermic image courtesy of happysnappr/Adrian Clark

Migraineurs - You are in famous company!

In the Chicago Sun-Times this morning, a list of presidential letters which will be auctioned by Sotheby's next month includes:

• • Thomas Jefferson reporting on his debilitating monthlong migraine headache and George Washington's failing health.

Sometimes it just helps me to remember that people have suffered from this disease throughout history - and some of them achieved amazing things nonetheless - and with none of the treatment options we have - still it couldn't have hurt to have lots of money, and slaves.  How much harder it must have been to be a working-class, or enslaved, migraineur.  (Hmm, maybe things aren't so different now after all.) 

- Megan Oltman

                                                         Jefferson Memorial photo courtesy of chadh

It's a Migraine, my friends

Does Migraine negatively impact friendships?  You'd think so, wouldn't you?  I've certainly changed more plans due to Migraine than anything else.  On the other hand, life, getting married, being an adult, being out of school, having a job, and having a family, can all impact friendships.  Add Migraine or other chronic illness to that list, and it's the icing on the cake. 

I must say all my friends seem to be quite understanding of my need to cancel plans, or the long gaps when I'm not in touch.  They are concerned and loving when I share with them about my struggles with Migraine.  I think,though, that I've already gotten them trained not to expect too much from me!  The best I can say about that is that none of them are all that great at being in touch either!  Which at least takes the edge off my guilt feelings. 

My best time for friendships was the last two years of high school and the four years of college.  Law school wasn't half bad either.  And my first few years of work, before getting married.  I was in a fun and stimulating environment, with a lot of people my age, sharing a common experience.  The first inkling of change came when I fell in love, and my friend Kathe said, "We won't be seeing much of you for a while."  I vowed it would not be so, but sure enough - if you're spending lots of wonderful delicious time with one person, you can't spend as much of it with your friends. 24 hours in a day, right?  (Here's me and Kathe in college.) 

And then the pressures of a career close in.  And if you have kids - forget the next 10 years at least!  Then you leave the city where everyone was a subway ride away and you move to where you have to drive to get anywhere, where everyone's more spread out, everyone has oodles of plans with their own kids, and the people nearby aren't always the ones you'd most want to hang out with.

But this was supposed to be about Migraine.  My migraines increased steadily at the same time these other life pressures increased.  Life threw some more things my way - the terminal illnesses and deaths of my in-laws, the long recovery from grief in my own household, my sinus problems, severe allergies, career changes for Danny and me both.  There have always been dear friends who I can call and cry to, or laugh with.  Sometimes I wonder how they could stand my repeated tales of woe.  As my migraines increased, time spent with friends decreased. 

I just don't see my friends, or talk to them, enough.  I miss them.  I've been missing them for over 20 years.  And I know Migraine has made it harder - much harder, for me to make new friends.  On one famous occasion Danny and I had an outdoor brunch at a trendy place with a couple we really liked - and I managed not to puke in the gutter until we were crossing the street back to their apartment.  We never socialized with them again!  Coincidence?

Year before last one of my best friends from High School, Laura, was ordained as an Episcopal deacon.  I flew out to Chicago for her ordination, meeting up with two more of our closest High School friends.  I endured long flight delays due to thunder storms, a noisy hotel, and lack of sleep.  Had a wonderful day at the ceremony and party with Laura and her family, and David and Vick.  My migraine didn't hit until I was out to dinner with David and Vick, head down on the table, unable to eat any of the expensive gourmet food I had just ordered.  They took me back to my hotel and took care of me.  They were angels.  But it was not how I had wanted to spend the time with them!  (The picture is from Laura's ordination party - me & my High School buds, 29 years after graduation!)

Life is hard enough on our relationships.  We don't need Migraine on top of it all, making it harder.  I just try to keep sharing, keep calling, keep trying to make plans.  And when I do talk to my friends, I feel so much better.

- Megan Oltman
Friends do make life worth living!

 

Take at first sign of Migraine

If you are among those lucky enough to be able to use drugs in the triptan class, Migraine abortives, you've seen this advice "Take at first sign of Migraine."  Most of us find them quite effective when we follow this advice.  But like many things in real life, following the advice isn't easy.

Triptans were the first, and are so far the only, class of drugs specifically designed to abort a Migraine attack.  When they were first introduced in the 1990's, they revolutionized the treatment of Migraines.  Rather than simply treating pain, or reducing the inflamation of blood vessels, they work directly to end the neurological process which is Migraine.

As described by Dr. Gary L'Europa in his excellent article last June in the Providence (RI) Journal, Stop Limiting Migraine Medicine , the migraine process includes these phases:

     "Prodrome consists of fatigue, neck pain, hunger, thirst, and other physical symptoms that occur up to 24 hours before the headache.

     "Aura occurs up to 60 minutes before the headache and produces a sensation of seeing sparkling lights or feeling numbness or tingling in the face and hand.

     "Headache, lasting as long as 72 hours, consists of severe throbbing pain similar to that associated with meningitis. This pain is often associated with nausea, vomiting, light and sound sensitivity.

     "Postdrome consists of fatigue, neck pain and lethargy that lasts 24 to 48 hours after the headache."

So what's the first sign of Migraine?  Most migraineurs report that triptans are not particularly effective in the prodrome phase; they wait to take them at the first sign of headache.  I can attest to the fact that my triptans are most effective if taken at the very first sign of head pain.  I haven't tried them in prodrome, since fatigue, neck pain, hunger, thirst (and irritability) can have other causes.  Also because I am afraid to waste one of my precious triptans.  Which brings us to my main point.

Triptans tend to be very expensive.  Imitrex, which I take, retails at around $20 to $30 per pill.  It often takes two doses to end a Migraine attack.  Given the cost of triptans, many insurance companies began in 2007 to set lower limits on the number of doses per month they would cover.  My coverage went from 9 per month to 4.  This was based on some math they had done on what the "average" migraineur needed.  I guess I can take pride in being, once again, "above average!"  I have 4 - 5 migraine attacks per month.  Migraine researchers estimate that 46% of migraineurs have more than 3 attacks per month.  Do they limit the doses of insulin a diabetic can have to the amount an "average" diabetic would need?  (Maybe they do... someone fill me in... either way, it's a scandal!)  Seems to me the reason our doctors prescribe for us, not our insurance companies, is because they treat the actual patient, not the average patient!

My insurance company politely suggests I look at having another triptan prescribed for me, as Imitrex is one of the most expensive.  I'd be happy to, but becasue of my multiple drug allergies, the neurologist I saw recently wasn't willing to prescribe a different one at this point. 

As Teri Robert pointed out in her article Doctor speaks out about insurance limiting triptan Migraine medications,

     "Limiting triptans is beyond absurd. It's counter productive, inane, and cruel. Many Migraineurs, when faced with a Migraine and no triptans, end up in the emergency room. Ever pay an emergency room bill? The cost of a reasonable month's supply of triptans costs far less than a single ER visit. Duh! Maybe part of the problem is that many insurance plans have two parts -- medical care and prescription coverage. The people managing the prescription coverage don't care about ER payments because that's a different budget."

After many calls, 4 months, over $350 out of my pocket for medication (and several seemingly stress triggered Migraine attacks following calls to the insurance company,) they have now told me they will cover 9 pills per 23 days.  This comes out to almost 12 doses per month.  Which ought to be enough for my average month, but...

Can I take the Imitrex at the first sign of Migraine?  Certainly not.  I have moments, or sometimes hours, of mild migraine pain up to 8 times per month.  That's on top of my 4 - 5 "full blown" migraines.  This may be the sign of a transforming migraine pattern.  I have an appointment with a bona fide migraine specialist in early June - we'll have to talk on this blog about the lack of qualified headache specialists another time.  For now, my attitude seems to be that the pain isn't bad - many of you have it worse - so I save the Imitrex for when I feel a "real one" coming on.

Is this a good strategy?  Probably not.  My other alternative, I suppose is to pay out of pocket for additional Imitrex (at $26 per pill at my local pharmacy.)  I do get what samples my doctor can spare me when I see him.  But I have to say, when it comes to aborting Migraine, most of us are between a rock and a hard place.

- Megan Oltman

It's a paradox wrapped in an enigma!

                                                              Signs of Spring photo courtesy of Just-Us-3 

                                                              Hammer photo courtesy of Darren Hester