Free my Brain from Migraine Pain

Your Host Seized by Election Fever

I have to admit to a new illness - not a chronic one this time, but acute.  I have election fever.  I fear I will be good for nothing until the election results are in tonight, and that will be late.  Tomorrow I will be exhausted and probably have a Migraine from lack of sleep.  I could hardly sleep last night, and my dreams were full of voting booths and speeches, polls and impassioned arguments.  Yesterday I had a teary conversation with my parents about how they raised me, about the values of inclusiveness and democracy, remembering the assassinations of Dr. Martin Luther King Jr. and Robert Kennedy in my childhood, my parents' deep despair at those events and how they explained the world to me around them, and how this election feels like a fulfillment of what my parents have stood for their entire lives.  Who else out there is as worked up as I am right now?

I already anticipated that I would not sleep much tonight; I didn't expect that I would have such trouble sleeping last night.  I didn't expect that my irritable bowel syndrome would flare up, as it did overnight and is today.  It's a good thing I live in a very small town because  a long line at the polls would not work for me today!  I plan to spend a few hours volunteering today, helping others get to the polls, providing rides if needed, as long as my body allows me.  

As a coach, as a chronic illness coach I should probably be advising you, and myself, to relax, to get rest today, to go to sleep tonight and find out the election results in the morning.  I don't think I would be capable of taking that advice.  We are human, and we must concede our humanity.  My Migraine Connection posted their poll of the week today - "Do You plan to vote regardless of a Migraine?".  Of around 120 responses so far, 94% said yes, they plan to vote regardless of a Migraine.  That's how important this election is to us.  The outcome here matters to all of us, wherever we stand politically and even wherever you live in the world.  I know many people who have devoted many hours to volunteering this election cycle; my illnesses make me unable to do as much.  I may feel very sick tomorrow, but I will know I have done what I can.

Be good to yourself today.  Vote if you can and you haven't already.  Help someone else if you can.  Let me know how you're doing!  I'll be back posting again when my fever has passed!

- Megan Oltman 

Childrens' Health Insurance Plans Sometimes Cover Parents Too

If you saw my recent post on our family's Health Insurance Headaches you know I've been doing a lot of research into health insurance options lately.  I thought I'd pass on some information that might help some of you.  In the United States, every state and territory provides low or no cost medical insurance coverage to uninsured children under a federal initiative called the State Children's Health Insurance Program (SCHIP).  The program is paid for by both the Federal and State governments, but each state administers its own program, including (within Federal guidelines), determining eligibility, benefits, and payment levels. 

The program was originally designed only to cover children, but has been extended to the parents of eligible children by a number of states.  In my state parents of children 19 and younger can qualify for free coverage if they are under a certain income guideline, and for those earning slightly more there is a sliding scale of premiums.  Some other states may require the parents to be already receiving public assistance or Medicaid.  I mention it because it is worth checking your state's rules.  So many people are temporarily out of work or their business has declined or other factors leave them unable to afford the insurance they once could. 

I hope a few of you reading this are helped - or know someone else who could use this information.  I know it's no help to those of you who don't have children, or whose children are grown, or who earn too much but still can't afford good health insurance.  I hope we have a better system soon!  If you live outside the US, I hope you live in one of those sensible countries with universal health coverage!

- Megan 

                                Healthcare clinic image courtesy of Daniel Lobo.

Is the Economy Hurting your Head?

As you know from my recent posts, the costs of health care and our national tragedy of a broken health insurance system have been hitting me where I live lately. Of course I'm far from alone in this. In the current economic crisis, people are finding it harder than ever to afford the medications and health care they need.  In a study published on October 14, the National Headache Foundation (NHF) surveyed 270 headache sufferers on line recently, and found that more than three quarters of the respondents said they have cut back financially, and those cuts have impacted their headache treatment:

63 % admit they rely on prescribed medications for their headache.  However, since the economic decline, 29 % have either delayed or skipped filling prescriptions for headache medications due to financial set-backs.  Another 53 % switched to over-the-counter medication instead of their prescription medication to treat headache in an effort to save money.

Migraineurs are not alone in this, of course, the New York Times reported last week that prescription drug sales are down, and people are cutting back on life saving medications for many medical conditions.

The NHF’s survey also found that people were cutting back on certain types of food purchases, and were not sleeping as well and feeling more stress due to their economic situation.  Sleep disturbances, anxiety and dietary changes were all cited as triggering increased headaches.

Delaying or skipping filling prescriptions, or using over the counter medications as a substitute is a serious concern.  It’s easy for me to say to you – don’t cut back on prescription medications!  Find something else to cut back on!  If the choice is between snack foods and prescriptions, definitely give up the snack foods.  Unfortunately, many of my prescriptions have a $50 co-pay.  I could save a lot more money delaying a $50 co-pay than going without a $3.89 box of donuts.  Sometimes we are faced with real, terrible choices.  Sometimes we have to choose what to do without, and there may be no truly right answer.  I will not presume to advise you here - you must make your own choice.

Some economic insecurity is very real.  Some people lose their jobs, can't get loans, lose their investments, don't have health insurance, and have to make terrible choices.  Please ask yourself whether you really need to forgo this expense, or whether it is just anxiety and fear for the future that is making your decision for you. 

The NHF has some suggestions for ways to afford your prescriptions:  

• If you are unable to afford your medication, many pharmaceutical companies offer patient assistance programs. Talk to your doctor or visit the NHF Web site (www.headaches.org) and click on Headache Education-Tools for Sufferers for a list of available programs.
• Talk to your doctor about your financial situation; there may be a generic form of your prescription available.

Beyond the nuts and bolts of paying for the prescriptions, though, you need ways to manage your stress and anxiety.  I suggest snuggling a kitty if you can.  NHF has some good advice, picking up on some familiar themes here at Free my  Brain, they suggest you practice relaxation techniques and include exercise in your daily routine.   Suzanne Simons, NHF Executive Director, concludes with a great piece of advice: "remember that the financial turmoil we are currently experiencing is temporary. ...[T]he situation will get better and keeping a positive outlook may help lessen the emotional and physical impact of these volatile economic times."

Remember that economies are affected by attitudes.  Refuse to give in to despair.  Do whatever you can to make things better.  And get out and vote for change!

- Megan Oltman

                              

Hand on head image courtesy of Mr. Thomas/Christopher.

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Migraine News from Between my Ears

A funny thing happens when you start blogging.  There is this little bit of celebrity that arises.  I can admit that like many people I once secretly wanted to be famous.  My friend Laura told me in High School that she pictured me as a kind of revolutionary leader, with thousands chanting my name.  If that had ever been my ambition, I'd have to say that I failed miserably.  I've made it through nearly 50 years of life and I don't think even dozens have ever chanted my name.  Not at the same time, anyway. 

But I digress.  I started this blog for a few reasons.  I wanted a place to share my thoughts on living with Migraine disease, and the other chronic illnesses I live with.  I particularly wanted to share my hope and strength, as someone who has come a long way in managing a life with these conditions.  I wanted to join the warm, intelligent, funny and committed community of Migraine and headache  bloggers and advocates who are making such a difference in the lives of patients and in advancing the understanding of this disease.  The big reason was this moment of truth I had almost a year ago, when I realized that my chronic illnesses are not just an impediment in my life; they are an opportunity to  share my professional tools and skills, and the wisdom I have accumulated, to help others manage their lives with Migraine.  I wrote a bit more about that a few months back in My Migraine Story.

I didn't really start the blog to keep the world posted on the doings in my own life.  I tell a lot of stories, partly because I come from a family of storytellers,and partly because I've always made points (with clients and anyone who will listen) by telling personal stories, about things that happen and lessons I learn.  So it's been a lot of fun doing that here.  And lo and behold, I learn that people are actually following (to some extent) what's going on in my life.  Little old me, Megan, Rachel & Adam's Mom, Danny's wife, Joan & Jim's daughter, Jon & Ellen's sister, the lady in the house on the corner by the field, the little red-head... that one.  It's a small and gentle sort of celebrity, but I find when I don't follow up on things I've mentioned, sure enough, you're actually listening, and sometimes you ask.

So the news between my ears...

• I'm looking for an allergist to determine whether I should even pursue this Medication Allergy  challenge test idea, because as my friend Medieval Writer of Sparkling with Crystals reminds me, anaphylactic shock can potentially kill you faster than a doctor can save you, even in the hospital with a crash cart standing by.  
• I'm spending a little time, just a few calls here and there, my head and energy levels allowing,  volunteering for my candidate's campaign.  Please get out and vote for better health care!  You don't have to chance feeling well enough on election day; you can vote early in many states - go to Rock the Vote to check your state's rules. 
• My difficulties with the Topamax are settling down.  We'll see what happens when I go back to Dr. G and increase the dose next week!  Tingling has disappeared and the cognitive effects are fading.  An unexpected benefit seems to that it is functioning as an anti-anxiety med for me! I am a pretty anxious person by nature, and I tend to obsess on things, but it seems like the slight loss of focus I have on the Topamax means I can't focus on something long enough to really obsess and get anxious! Kind of weird - but I'm just not worrying as much!  MaxJerz of Rhymes with Migraine pointed me towards this piece on Health Central's Anxiety Connection indicating that Topamax is sometimes prescribed in combination with other drugs to treat anxiety.  Who knew?  (Well obviously, someone did, but not me!)
• I don't think the Topamax is having a major inhibiting effect on my Migraines yet, though I haven't had a really bad one in the month I've been on it.  I am doing a very slow titration to minimize side effects and will probably increase the dosage when I see my HA specialist next week.  Judith Warner wrote a pretty good piece about her difficulties with Topamax (not named, but quite identifiable) in the NYTimes today, but they didn't publish my comment.  I am trying not to take it personally!
• Our Health Insurance Hassles and Headaches may turn out to be a blessing in disguise, NO thanks to Oxford (who I will still refer to as the insurer from hell) because it looks like there are a range of better, more affordable options out there for us.  I got a lot of info that may help others, too, and will try to do a whole post on it soon.  For others who are struggling with insurance, if you have children, be sure to check out your state's insurance coverage for children.  Some states now extend that to parents of children 18 and under.  I know this is no help for childless people or those whose kids are grown; you deserve health insurance too!
• In the meantime, I seem to be developing a lot of Acephalgic, or Silent, Migraines (phono & photo-phobia, dizziness, without head-pain) in the evenings.  It's better than having the head pain, but still means I have to retreat to my cave (i.e. bedroom) for the evening and can't hang  out with the family much.  Bummer.  More to talk to Dr. G about next week.
• And, (a drumroll please...) my biggest news... by next week (I hope) I should be launching my new website, containing this blog and other resources for Migraineurs, including relaxation teleclasses - stay tuned for more!  Hard at work on it now - soft greens and yellows - looking pretty - can't wait...

Hope your heads treat you well and you have an AWAP weekend!
- Megan Oltman

We've moved! Come over to our new site www.freemybrain.com for new content on managing life with Migraines and chronic illness.

    

Please Email Your Senator Today!

You Can make a Difference - Right Now!  We migraineurs spend too much of our time feeling helpless.  Part of taking back your life from this disease is to feel and be powerful wherever and whenever you can.  You can do a piece of that today.  If you are in the US, please email your senators right now!  We just got word this morning that today is the deadline to get senators on board to support increases in NIH funding for headache disorder and Migraine disease research.  Last month's efforts to get support in the House of Representatives were successful, so thanks to everyone who helped!  And now we get another chance!

Here's the text of the email I received from ADHA this morning.  You can click on the link below to email your senators in less than 5 minutes.  Thanks in advance for your support.  Together we can make a difference!

Dear Ms. Oltman: 

Our efforts last month to urge members of the US House of Representatives to support increases in NIH funding for research on headache disorders were highly successful. Twelve Representatives signed the Obey/Walsh letter. This is an outstanding result for the first mobilization of our numbers, and we are optimistic that it will be enough to have our message appended to the House appropriations bill.

It is now time to contact your US Senators for the same purpose. Unfortunately our window of opportunity is only narrowly open. The letter with Senators' signatures must be submitted by today, April 4th.

1. Please take just 5 minutes RIGHT NOW to go directly to http://capwiz.com/headacheadvocacy/issues/alert/?alertid=11231066&PROCESS=Take+Action  and send your message to your two US Senators
2. Please forward this email right away to anyone else concerned about the inadequate state of care for patients with headache disorders.

Only with increased research will new effective treatments for headache disorders become available. And only with your help will such research activities increase to levels appropriate to the huge scale of this problem. The larger our voice, the greater will be our impact.

Thanks again for your efforts.

Robert Shapiro, MD, PhD
William Young, MD,
Teri Robert, PhD
Brad Klein, MD, MBA

And thanks from me too! - Megan

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

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

We've moved! Come over to our new site www.freemybrain.com for new content on managing life with Migraines and chronic illness.

Boy, that's a Real Migraine!

a. Europe's $1.50 Headache Is Italy's Migraine(Headline in Forbes.com today, article by Vidya Ram – the article is about the rising euro and its effect on Italian exporters.)

b.  SOUTHERN AFRICA: Integration and the migrant migraine (Headline from IRIN, posted by Reuters today - the article is about how the flow of Zimbabwean migrants to neighboring countries is hindering the goal of Southern African regional integration.) 

c. Saturday - slept badly Friday night, migraine by afternoon, pain at level 3 on left, moderate nausea, picked up boys from movies, pain at level 8 on return, both sides now, extreme light sensitivity, took Imitrex 7 pm, lay down, room dark.  Can't read or look at computer screen.  Vomiting on & off 3 hours, pain varied from 8 to 5,  went to sleep around 10.  Pain at a 3 on waking, tired, achy, depressed all day.

Okay, are you ready?  Which one is the real migraine?  You picked c, right?  Good job!  You get a gold star.  a and b are known as frustrations, hassles, problems or perhaps international crises.  They are not migraines.

Am I being too much of a stickler here?  Maybe.  Maybe not.  There's a lot of real news about migraine in the news these days.  Partly thanks to the New York Times Migraine Blog, or maybe our chance for some recognition and understanding has finally come.  But most of us get annoyed by the trivialization of a very real and debilitating illness.

Interestingly, today the first 15 pages of results of a Google search on migraine are actually some kind of content about migraines. This was not so a few months ago, when I tried the same search and came up with many references like the two above, and one about a hockey team's poor performance being a “migraine” for the team manager.

I am willing to ascribe most of this to ignorance, not evil intention.  I think it's become a fashion to refer to a big hassle as a "migraine" instead of just a "headache."  However, it does distract public attention from the fact that this is a disease.  A fact that most people still don't know.

Is it okay to say "what a headache?"  If you've ever had a headache, you know what that means.  Most people have had a headache, and know that tension can lead to one.  So we call things that make us tense or upset "a headache."  People also say "I just about had a stroke!" or "I just about had a heart attack!" I've been guilty of that myself.  After a stroke hit someone very near and dear to me, I didn't feel like joking around about it any more.

This is in the category of being responsible for what comes out of our mouths.  We create our world through language.  We shape what is possible for ourselves and others.  You only have to listen to political double-speak to understand that.  Whoever gets to frame the issues tends to win the debate.

And so, maybe we can call a hassle a hassle and a crisis a crisis?  It seems like in our culture we always have to go one better, to make things more extreme.  If 10 years ago we called a hassle a headache, today we have to call it a migraine.  What will we call it 10 years from now?  A brain tumor?

- Megan Oltman
Somebody stop me before my head explodes!

                                                cave waterfall courtesy of subflux; brain courtesy of Gaetan Lee 

We've moved! Come over to our new site www.freemybrain.com for new content on managing life with Migraines and chronic illness.