I am now a Patient Advocate and Contributor on Migraine.com

Sometimes, everything lines up in exactly the right way.

My favorite headache blogger, Kerrie Smyres of The Daily Headache, had posted an article about several available CGRP studies and the pros and cons of getting involved. Since one of the studies was Amgen, I commented that I hadn’t had a hugely noticeable improvement on that drug, but that I would soon begin a new study. I didn’t think anything of it as Kerrie doesn’t always interact with readers, though she had been very helpful to me a couple years ago when I was considering trying Ritalin as a preventative, which she had also attempted. 

So I was pleasantly shocked and super excited to receive an email from Kerrie thanking me for giving a shout-out to her company TheraSpecs in an advocacy post on Facebook. She then asked if she could interview me for either her personal blog or Migraine.com about my experiences in the CGRP studies. 

The CGRP drugs in development right now are going to completely revitalize migraine treatment. They will be the first drugs to be created for the prevention of migraine – think of that. 36 million people in the US suffer from migraine and ALL the drugs used to prevent them are for other things. Used off-label for migraine, most cause significant side effects and are very hit or mis in their effectiveness. So there are millions of people waiting with bated breath for the new drugs to be approved, drugs which target migraine specifically and have no detrimental side effects. Needless to say I was ecstatic to speak frankly about my experience on two of the new drugs, and opted to have it published on Migraine.com  for the largest audience.

Kerrie sent me an email of very specific questions. My migraine brain had a hard time recalling all of the details, so I dug up my consent forms and checked my blog for dates and information. I answered the questions as thoroughly as possible, Kerrie asked for clarification on some things, and said she would submit the article to be published when Migraine.com was ready.

It was published, which I blogged about previously, and I interacted with some readers on Facebook. Because of this article, and probably this blog, it was decided that I would be a unique and valuable voice as an actual Migraine.com Patient Advocate and writer, and I was asked to join the team.

It is hard to describe to someone outside the chronic illness world how exciting that was. It would be sort of like if a musician who plays local bars in his hometown was suddenly asked to tour nationally with famous bands he always admired. I’ve been blogging for five years to around 300 people. Now some of my writing on migraine will be seen by at least 60,000. And those are just the people who subscribe to the newsletter.

I will still be blogging here about more personal topics and will post my migraine.com articles after they are published. I have two posts ready to go, whenever Migraine.com is ready. I am completely thrilled to be joining this illustrious list of advocates including Katie Golden, Tammy Rome, Diana Lee, Nancy Harris Bonk, Anna Eidt, Janet Geddis, and Jennette Fulda, whose book Chocolate & Vicodin I have been wanting to buy for some time. All of the contributors have so much to offer and I am excited to get to know them better and become more familiar with the names I didn’t know previously.

I am @headcase73 on Twitter.

Life has been hard for several years, but J and I have been working hard to make things better. And I think we’re succeeding. 

Yay!

My CGRP interview on Migraine.com

I always feel guilty when I return to the blog after a long absence, which seems silly. Like I need to explain myself. Life ebbs and flows  and I often find myself unable to do everything I’d like to be doing. I just can’t fit it all in, which I think is a pretty universal experience, especially adding in school-age children and chronic illness.

I don’t think I ever let everyone know that J got the job he so desperately needed to get at the local state university. So many of my entries over the last 2-3 years have focused on our poverty, and I hope we will be finally digging our way out of that hole. Our normal, non-government insurance coverage will begin in a few weeks and I can finally find a new doctor and file a complaint about Dr S.

I just started a second CGRP study, and Kerrie Smyres who blogs at The Daily Headache interviewed me recently for an article on migraine.com. It was published yesterday, please read it!

X is preparing for a theatre competition this weekend and starting middle school in a few weeks; Zo was awarded the roles she wanted in this year’s Nutcracker. I have been occasionally serving at my friend’s nanobrewery and contributing to a new online news source in my hometown, which I’m very proud of. In all, things are… dare I say it? Good.

Chapter 1967: My Man Wrote a Short Story



Chapter 1967

By The Mechanical Cat

Norma Jeane leaned back in the wooden chair and gently let her hand drift down her leg to feel the comfort of the snub-nosed .38, snugly holstered against her earthly thigh. A wisp of smoke left her mouth and danced toward the ceiling of the cabin. “Well, since every fucking agency and commission on the planet knows what’s going on in this cabin, what’s the plan now kitty-boy?” Norma’s voice was raspy.

“We’ve got an entire social revolution underway,” I said. “It’s a good diversion for now.”

“Obviously not fucking good enough. Do you even know who is outside?” Norma asked.

Across the room the glowing red eyes of the Mothman could be felt like the aurora borealis. He stood and walked toward the table where I was sitting with Norma. A murky hypnosis spread around us as the  Mothman tried to communicate.

“This is shit,” said Norma. “No fucking way. I am not doing it.” Bigfoot looked at the platinum blond wig and rhinestone dress lying in a heap on the table and raised a hairy eyebrow. Click. Flame. Cigarette. Norma inhaled and out blew a cloud of smoke. “Right now there are twelve agents out there. Watching our every move. Listening to every cigarette I light. Every word we speak.”

“Listen Norma-”

“No, you listen, Cat. Marilyn Monroe is dead. DEAD.” And she raised her eyebrows, expecting a response. She tilted her glass of whiskey back to her mouth and finished what was left. “I’m going out there.”

“Norma, it’s too dangerous” said Bigfoot through a face of fur.

“Nice,” said Norma. “Fuckin awesome. I thought you were-”

“You can’t leave yet,” I said, leaning forward through the shadows and smoke of the cabin. “We’re going with you.”

“I don’t need the help. I can take care of myself.”

“Not this time Norma, those aren’t CIA agents, those are inter dimensional beings called flyggian pony scouts.”

Norma looked at me with a suspicious smile. “Don’t act like I’m some naive school girl. I know what a pony scout is.”

And with that, Norma was out the door. Gun shots exploded in the darkness like camera bulbs flashing on her wooded stage. A red carpet spilled beneath her feet. Her attack was silent – violence at an efficiency matched by few others.

The quiet that filled the forest after she was done was complete. You could hear pine needles hit the dirt. Her heavy steps across the floor of the porch and then through the door – you could tell she was pissed. Norma sat down where she was, almost unchanged except for the freckles of blood she had attained in combat.

“How the fuck did you kill twelve pony scouts with six bullets?” I asked.

“Magic bullets,” Norma said with a twinkle in her eye. “How do you think we pulled off JFK?” A growl erupted from Bigfoot, which Norma silenced with a glance.

“I thought there was more than one gunman?”

“Well that’s just it,” said Norma. “There were no gunmen. There was a gunwoman, and a gun Bigfoot… and I don’t know what the fuck Mothman was doing. Mothman was the umbrella on the grassy knoll. I still don’t know where he’s coming from most of the time. Bigfoot was a terrible shot so I had to finish him off.”

“Where was Bigfoot?”

Mothman communicated telepathically to everyone in the room:

***bigfoot cannot be seen in direct sunlight***

“Where were you?” I inquired in complete shock.

“Dressed as Jackie. Had to make a getaway. Jumped out of the back of the car, but the Secret Service pulled me back in…” her voice trailed off. “Back and to the left. Back and to the left.”

“Oh…my…God. Why did you kill him?” The stare and silence between us could have stopped galaxies.

“Love and revenge. As simple as that.”

On Grieving, Celebrating, Writing, & Auditioning

This is a piece I wrote for the alternative local news site J created and maintains, for which I now work. It is a personal story of my experience of the celebration of life service for a beloved choral director. It is published, with additional photos, here.

What was so valuable for me in writing this piece is that after I published it and re-read, I realized that the thing with the Christmas lights wasn’t my real Mr. Brown Story. My regret over not auditioning for Madrigals actually changed the way I parented. I encouraged the girls to try out for things, to go after the dance parts and musical theatre roles and to be brave. And they did, and continue to, creating the best friendships and experiences of their young lives. Which was indirectly about Mr. Brown and is truly life altering.


From the news website BG Independent Media:

St. Mark’s Lutheran Church in Bowling Green was nearly full for Jim Brown’s Celebration of Life service Saturday morning. I scanned the crowd as people filed in, looking mostly for those I remembered from high school. We sat in the section to the right of the pulpit with other members of the Memorial Choir. Stacey (Timmons) Higgins from the Class of 1990 was sitting on my left; Amanda Gullufsen, a fellow graduate of the Class of 1991, was on my right. Both had been Madrigal Singers with Mr. Brown in High School and had traveled with him to the former Soviet Union as it was crumbling. I had been in regular Choir my 10th – 12th grade years, singing such memorable pieces as “I Sing The Body Electric” (from FAME) and the Rutter Requiem. Unsurprisingly, Mr. Brown had known John Rutter personally.
My husband, John Zibbel, had graduated from BGHS some years after me and had been fortunate enough to be a student in the first Humanities Class co-taught by Mrs. Dianne Klein (Former English / Creative Writing) and Mr. Brown in their last years teaching before retirement. John’s class in the 98-99 school year was themed “Making The Midwest Home.” They traveled by bus to Chicago, Cleveland and Pittsburgh. In speaking about the Humanities class, Mrs. Klein stated that due to the closeness that the groups experienced from traveling around the country together, the students became family to Mr. Brown as much as his own blood relatives. John’s classmate Jessica Snyder Ruffner commented, “The humanities class had a major impact on me and I am forever thankful to her [Klein] and Mr. Brown for choosing me to participate.” I know John felt similarly.
As I continued watching, I spotted Class of 91 alumna and friend Michelle (Whitacre) Crites. I saw Dr. Eric Myers, former principal of BGHS and school board member, and Mayor Dick Edwards and his wife Nadine. And Andy Halleck. “Did you know he was a Madrigal my senior year?” Amanda whispered to Stacey. “He had chops!”

I was happy to hear this, because as well as being his student, I had also been Mr. Brown’s neighbor, living with my parents and brother diagonally across the street on North Prospect. Mom had told me Mr. Brown’s stately Victorian had been purchased by The Hallecks, and being reminded that Andy had been a Madrigal made me feel pleased that he would be honoring the memory of Mr. Brown which surely infused the house. The positive impact Mr. Brown had on those elite, beautifully-voiced Madrigal Singers through the years was always very evident to me. They were the best of the best, braving auditions I was never able to face.

“I was trying to think of a ‘Mr. Brown Story’ to share, and I couldn’t think of any at first,” Amanda confided in a low voice while we waited for the service to start. Her mother, Linda Gullufsen, was the director of the Memorial Choir and a former colleague and dear friend of Mr. Brown’s. At the first rehearsal, she had stated, Everyone has a Jim Brown story, and she had shared a few of her own through tears. Amanda continued, “I finally thought of one. He gave me the only B I ever got. And it was a B minus! In Choir! When I went to him to ask why, he looked at me and replied simply, ‘Just shut up!’” She grinned. The admonition had been spoken in a direct, but light hearted way. “And oh, I knew he was right. I was a talker for sure. But what was I supposed to do? I was in the back next to… oh you know, Alex DePue. And Dave McCutcheon. But he was right, and I learned so much from that.”

While the organ prelude rang out through the church, I thought about my own Mr. Brown Story. What could I say about him? He hadn’t changed the course of my life. I hadn’t traveled with him the way Stacey, Amanda, and even my own husband had. But, I was his neighbor. And I thought about how beautiful his house always looked decorated for Christmas, and how sad it was the first Christmas after he’d passed away to see it dark and bare. My friend and neighbor Geoff Howes had even written a haiku about it. But during my junior high, high school, and college years that house had been the beacon of holiday cheer, and when Mr. Brown’s white lights and garland went up, we truly knew the Christmas Season had arrived. That, then, was my story.

The service started and the congregation sang a hymn. Then there was a prayer, and Mr. Brown’s younger brother, Bob, got up to speak. He thanked Mrs. Klein and others for taking care of his older brother’s health when he hadn’t been able to; and thanked Mrs. Gullufsen, Mrs. VanBlaricom (former BGHS German teacher) and others for putting together the Memorial Choir, a group of former students, colleagues, and friends of Jim Brown’s spanning fifty years who had been moved to travel from near and far to sing and remember him. Bob then told stories about Jim as a child; talked about Jim’s love of music and theatre and directing and how a severe illness his senior year of high school got him started on piano; talked about his travels, and all the famous people he’d met. Bob became too choked up to speak at least once, and made everyone laugh several times. He then leaned over, looked at Reverend Spicer almost impishly, and apologized to him in advance before telling the final story. He talked about going to visit his brother, whose name just happened to be James Brown, a common name he shared with another, rather more well known musician. Bob said that he would do the James Brown yell for his brother, and he did it right there. “AAAOOOWW! James Brown! I feel good!” And he said his brother Jim would be always be embarrassed, and afterward would whisper an affectionate, brotherly “Stop it.”

Then Bob told us all to stand, and to yell it with him. So we did. “AAAOOOWW! James Brown! I feel good!” Do it again, he said, and we obliged. Then he paused and whispered into the microphone “Stop it.” The church erupted into spontaneous applause, which felt only natural at a celebration of life for a consummate showman.

Daniel Boyle, also from the class of 91, accompanied the choir on piano and had composed a gorgeous original piece called “Thank You, Mr. Brown” which he played beautifully. Next to me, Amanda dabbed at tears with one of the tissues Stacey had thoughtfully given us before the service. Dan also played the postlude on organ, the Widor Toccata, which he later said he had just played for the congregation at his own church for Easter.

Soon we were standing up and joining the other choir members on the risers for “Breathe On Me, Breath Of God.” The story about this song is that the Madrigals sang it in Estonia, in a building so cold they actually could see the white plumes of their own breath. Having attended only one of the rehearsals I was sight reading, but I was proud of the way I had no trouble keeping up and blending my rusty alto with the voices of the rest of the choir, one eye on Linda’s flying hands. As I had many times before, I regretted not having had the courage in high school to audition to be a Madrigal myself. And was proud, thinking about my own young daughters and how I taught them to start auditioning for theatre and dance parts early, to never be afraid to go after what they want and to believe in themselves in a way I never had.

We stayed on the risers through a reading, then sang “Alleluia.” When we were finished, the congregation was once again moved to applaud. We sat down.

Mr. Brown’s nephew Kevin read the Gospel with the familiar words “I am the resurrection, and the life: he that believeth in me, though he were dead, yet shall he live,” and singing the Rutter Requiem came back to me, with the flute and the timpani and harp which accompanied us, and those same words. “And whosoever liveth and believeth in me… shall never die.” I was wiping my own tears then.

The Meditation by Reverend Spicer was very nice, and a smaller group sang “Sing Me To Heaven,” which Mr. Brown had chosen for both his parents’ funerals. Then it was nearly over and time for the Hallelujah Chorus. Michelle, from the congregation (I keep wanting to say “audience”), posted a video of it later and wrote “The Hallelujah Chorus was sung at the end of every Jim Brown Christmas concert. He invited all previous singers that had sung it in years past to join his current choir on stage to sing as one large choir and it was always beautiful. Today’s memorial service ended the same way. Very touching tribute to a wonderful man.”

After the service, I felt the familiar flush and drone of a migraine coming on, so I didn’t stay for the catered luncheon. I later asked Stacey to describe it for me. She said there was a presentation made by Dr. Myers and Linda VanBlaricom to Francis Scruci, current superintendent of BG Schools, of a plaque commemorating Mr. Brown to be hung in the lobby of the Performing Arts Center, inscribed with the lyrics of “Sing Me To Heaven.” Brother and nephew Bob and Kevin Brown shared touching and humorous stories about his life, and were followed by loving tributes from former students Andy Newlove, Molly Ogden, and former colleagues Jan Woodend (German teacher) and Linda Gullufsen. The event ended with the serving of Mr. Brown’s favorite dessert, ice cream, which was enjoyed in the camaraderie of those whose lives he touched.

I’d like to end with the comments of two Madrigals who are friends of mine from high school and could not attend, made on Facebook after viewing J.D. Pooley’s lovely video of the Memorial Choir’s first two pieces, and shared here with their permission.

Jeremy Smith, Class of 92, wrote “I just sang w/ the basses in my living room. God bless you, Jim.”
Chris Hutchinson, Class of 91, said “I was fortunate enough to be part of the Madrigals that sang Breathe on Me Breath of God in the Soviet Union. To hear it again sung by this group as a tribute to Mr. Brown really caught me off guard…in a good way. It sounds amazing and really brings back a lot of incredible memories.”
And finally, some last thoughts from Linda Gullufsen on her way back home to Tennessee with her husband Rex this morning. “The Memorial Choir came together, not for a choral performance, but as 70+ individuals wanting to pay tribute to their teacher, colleague, mentor, and friend. A community of singers was thus created from 15 states, 2 centuries, and a dozen different choral ensembles that spanned 5 decades. We came together for one brief moment to celebrate Jim’s life. I told the singers that this experience would grow sweeter and more precious to them over time, that it would become one of their cherished memories. And I believe it will. In the words of a song from the musical Wicked, ‘Because I knew you, I have been changed for good.’”

Thank you, Mr. Brown.

“I look back on Venus, look back on Mars / And I burn with the fire / Of ten million stars / And in time, and in time / We will all be stars”

-I Sing The Body Electric

i sing the body electric

  
Yeah, so there’s my full name, the full names of two of my friends, and the bar I used to occasionally hang out in. That’s okay. Hi, I’m Elizabeth Roberts-Zibbel. That’s me, Facebook reminded me, with my friend Phil, four years ago. That photo makes me happy. Watching three particularly crazy episodes of The X-Files (Season 2) with John tonight while filling Easter eggs with candy made me happy as well. 

I went semi-anonymous here several years ago after getting in trouble at work (see “Open Letter to the Person Who Turned Me In“) which, just as I thought it might, began my slow painful departure from Parks & Rec and, eventually, the working world. I quit, pulled my retirement, planned to return to employment after some time off, but instead slid farther into illness and anxiety and applied for Disability instead. It was approved, though SSI payments have now stopped as we refused to jump through continued ridiculous hoops. Fortunately, we no longer so desperately need that money.

This weekend I feel closer to the person I was when I still worked, closer to the person I was when the above photo was taken. John just interviewed for a full time position at our local state university, instructing in the College of Education and Human Services. He quit his job teaching kindergarten soon after I left my job. We were both miserable. Neither of us wanted to live the rest of our lives the way we were, in jobs we hated, barely seeing each other or our children. It has been a long, ridiculously hard road since then, but we did the right thing. He also did the right thing again, quitting the very low paying and traumatic job he got in between.

John is likely to get this position. We’d be back on regular insurance, he’d be unionized, our daughters’ college educations paid for. Not only that, but he just started his own web design company, which I will run once he begins teaching full time on campus in the Fall. If he doesn’t get the job, he will still be teaching there as part time staff. His first class, Family Diversity, is going amazingly, awesomely well. He also designed the website which is allowing two of our hometown’s most beloved journalists to publish their own work, and own the rights to it, for the first time after our paper’s publisher fired one of them – this became somewhat viral news for a short time – for an editorial questioning the NRA (the other had quit previously over changes being made). If you’d like to check it out, it is http://www.bgindependentmedia.org. I do copy editing, obituaries, and arrange advertising space for the website. I am extremely proud of it.

My Etsy shop, http://www.windinthedoor.etsy.com, is successful on its own too. We are going to combine it soon with Zibbel Media. I feel like I have purpose, and worth. I still volunteer at the Historical Center, and am on the Youth Theatre Advisory Board, and am an active stage mom for both girls in their artistic performance endeavors.

Yes, it has been hard lately. I haven’t been to the museum in two months; I have been making once-monthly visits to the ER; my CGRP treatments for the study are over. My other worrying symptoms over the past year (see entry “Comorbid“) culminated in a trip to a new OB / gyn to see if my endometriosis had returned. It probably hasn’t, but I was found to have “pelvic floor dysfunction” and a visit to a physical therapist for treatment revealed that my pelvis was actually severely out of alignment, which certainly could have contributed to my chronic state. So far the physical therapy to fix the issue has only increased my pain. I had the horrible, demoralizing appointment with Dr. S, which I am only just now feeling recovered from. She did allow for my medication to be refilled, but with 0 or 1 refills only. I’m still “in trouble” is what that tells me. I had to stop the Corgard after once again being reduced to sleepy depression. As soon as I know whether I’ll be back on regular insurance, I will begin my search for a new doctor. I have not been back to the ER since February 26. I received a survey about that visit, so I did get the opportunity to thank the staff for treating me so respectfully, the opposite of my own doctor. The research nurse involved with my study sent the hospital a letter on my behalf, as well, though I don’t know if it will make a difference. I have not yet filed a complaint about Dr S but I fully intend to. The letter I wrote as a blog entry was not sent, though writing it made me feel empowered, and re-reading it still does, though at first I couldn’t see past the devastation brought on by my doctor’s harmful treatment. I don’t have to be a victim, or even a sufferer. I am still a survivor; a pain warrior. A success.

Success can be measured in different ways, of course. My daughters are healthy and happy, though I’ve realized Zo probably has some degree of Sensory Processing Disorder from her traumatic early birth. Neither of my daughters is intellectually brilliant, but emotionally and creatively they are both stars. John and I are stars too. We all are. 

Some days I feel happy, and capable. Other days I’m a mess. Chronic migraine or not… isn’t that just life?

   

Dear Emergency Room: A Story of Love, Despair, and a Life Less Ordinary

Update #2: so it turns out I am not going to send this. While at first the purging of such strong, righteous emotion even just for the blog felt satisfying, I am now so depressed I can barely move. My hands are tied, I’m helpless as always, and my head still hurts. The risk of alienating myself and burning bridges is too great. So what do I have? Pain, sadness, and a doctor who wants to bury me. All I am is a victim, the last thing in the world I ever wanted to be.

{see below for update #3}

Dear Mr. K and Staff,

First of all I want to extend my deepest thanks to you, and particularly the ER doctors, PAs, and nurses who have been tending to me and my severe migraines, vomiting, and dehydration when I have no choice but to seek your facility’s assistance in breaking my toughest symptoms after my methods at home become ineffective. The courtesy I am always shown (kindness and respect, lowering of lights, seeking isolated rooms to decrease noise, adjusting blankets and pillows) comforts and soothes the panic I feel at those pain levels. When I depart, fully hydrated and with pain reduced from an 8-10 to a 3-5, I feel immense gratitude, and not just because of the significant relief in my unbearable symptoms.

I know that treating chronic pain in an ER setting is a tricky proposition at best. Before succumbing to an ER visit, I will have been in bed several days prior, having used imitrex tablets, imitrex injections, zofran pills, phenergan, and a muscle relaxer in hopes I can sleep through the migraine and its myriad additional symptoms or at least lower the pain to a tolerable level. I have a prescription for traditional pain medicine as well, but use it only early in the process and do not keep attempting to add it to the mix, since if it doesn’t work in the earliest stages, it will not work at all. And at a certain point, everything I have at home fails to impact the pain, which is when I wrap myself in my “Frozen” fleece blanket and lay myself, desperate, at your feet.

Unfortunately, my visits have been around every 4 weeks this past year. During my pregnancies in 2004-5 and 2008-9, and before my hysterectomy in 2011 (for severe menstrual migraine and endometriosis), I would sometimes need to come in several times per month, at every ovulation and usually twice during menstruation. In July 2011, Dr. H (oh how I miss her!) and local OB/ Gyn Dr. P decided I would benefit from a hysterectomy (even at the ripe young age of 37). After the surgery and subsequent hormone adjustment, my situation improved significantly (though disappointingly, I was still chronic). During the years of 2012 to 2014, I was able to come to the ER much less often. This variance is the nature of the beast, and I have become used to it, always hoping the easier times will last while knowing better than to count on it.

Chronic migraine, or any form of migraine disease, cannot be cured. I will never get better in a permanent way. Some years are better, some are worse. The illness ebbs and flows, and is impacted by weather, stress, other sickness (such as sinus infections), and on and on; or will worsen for no reason at all. This year, I would call what I am experiencing a moderate flare-up of symptoms. Fortunately, right now I am able to spend time volunteering at the County Historical Museum; enjoy being an active member of the Youth Theatre Board, and most importantly, I am getting to spend quality time with my children while they are still young; as opposed to other time periods when I am virtually unable to leave my home for weeks at a time, often confined to bed.

A few policy changes have occurred which also have required me to make more frequent ER visits. When doctors were allowed to have their own patients admitted for inpatient care, I would be hospitalized for 2-3 days about twice per year to break up severe cycles, which would cut down on individual visits to the Emergency Department. There was also a time when certain rescue medications were able to be administered right in my physician’s office. Now neither of those options is available. I know hospitalists can choose to admit patients, but without being as familiar with me and my case, that is always a tough call and I usually prefer to recuperate at home since the hospitalist would not necessarily know what had always worked for me during an inpatient stay.

In 2013, I could no longer continue working ~ a terrifying financial nightmare. I was approved for Disability on my first attempt, rare for invisible illness, which means I was able to prove my complete debilitation and the fact that I had tried every possible avenue of care with only temporary success, or more often, none at all. Some of my attempts include:

• Botox administered by Dr N, a headache specialist  (6 treatments total – less effective each time)

• Physical Therapy

• Cranial-sacral and other massage with muscle stimulation

• Chiropractic care

• Hypnosis

• Homeopathy

• Acupuncture/ pressure

• Nerve block injections

• Every preventative medication available. All beta and CC blockers; all tricyclic antidepressants; various SSRIs and SNRIs; anticonvulsants (Depakote, Neurontin, Lyrica, Topamax); Lithium, Haldol, Trazodone. Ritalin. Bellergall and Sansert worked, but were taken off the market. I believe there is a new one for Alzheimer’s that has been used off-label for migraine, but my doctor at the time did not recommend it.

• Every abortive medication available, and some no longer available: Fiorinal & Fiorinal 3, Midrin, Cafergot, Buspar, Ativan; Xanax (which worked but I can no longer get anyone to prescribe); Ultracet/ Tramadol; Indocin and IM Toradol when I could still take NSAIDS; Baclofen and Zanaflex; sinus and allergy medications; every type of “triptan,” Migranal (intranasal) & IM DHE. The most effective medicines for controlling my symptoms continue to be Imitrex 100 mg tablets and 6 mg injections, and oxycodone / acetaminophen 5/325, as well as Zanaflex and anti-nausea meds (below).

• For nausea: compazine & Reglan (could not tolerate); Zofran and Phenergan suppositories (ongoing) and OTC Dramamine.

• Lidocaine administered into each nostril while I hung my head upside down

• Steroid (Prednisone) “burst and taper” therapy

• DHE and Magnesium infusions

• TENS units (similar to the Cefaly)

• Gluten-free diet and trigger avoidance
• Many CT scans, EEGs, as well as a recent MRI and MRV

• A six week Chronic Pain workshop

• Highly-regarded Neurologists / Headache Specialists, as well as an attempt with another who refused my case

• Yoga, meditation, mindfulness and gentle exercise

• Total hysterectomy and hormone replacement

• Elimination of all medications except twice weekly Naproxen to check for medication overuse headache

• Oxygen therapy

• Extensive testing for ANA (POTS / Ehlers-Danlos / Lupus) illnesses as well as many many other tests

• Eyesight (I use special migraine glasses called Theraspecs for photophobia but vision is fine)

• Dental for TMJ (none) and teeth grinding / clenching (mouth guard discontinued)

• Daily supplements recommended for migraine such as magnesium, B2, fish oil (DHA), feverfew, and probiotics (ongoing); butterbur (discontinued due to side effects); melatonin; Vitamins D, C, & K

• “Lipigesic” brand sublingual solution with feverfew and ginger which occasionally worked but is no longer being manufactured as far as I can tell

• Pain therapy with counseling, Progressive Muscle Relaxation, Cognitive Behavior Therapy, and biofeedback (ongoing)

• Participation in a chronic migraine open label study of the developing Calcitonin Gene-Related Peptide preventative medications at a world-renowned institute (ongoing) ~ contact: A.S.

• Successful treatment for depression, insomnia, hypothyroidism, stomach lining disintegration due to lifelong NSAID use (all treated by my GP) and endometriosis / pelvic floor dysfunction (ongoing with Dr R)

• Cartilage pressure point ear piercings

• Tools such as the “IceKap,” shiatsu neck massager, Chiro-Flow water pillow, Velcro adjustable pressure head band, headache trigger trackers / diaries / apps

• Capsaicin nasal spray

• And of course the use of heat, ice, isolation in a dark, quiet room; non-NSAID OTC medications when appropriate; constant hydration, topical gels and patches containing menthol and camphor; peppermint essential oil and Epsom salts; regular sleeping and eating patterns.

In addition, I see AS at the institute every four weeks, my pain specialist Dr M every 4-8 weeks (who prescribes the traditional pain medicine mentioned above to compliment the imitrex so I am not taking only one abortive med all the time). Due to some insurance difficulties I have not seen Dr Mac (pain therapist) for some time, but I am an established patient and the biofeedback skills she has taught me are invaluable. I plan to return ASAP.

The reason I am stating all of this in a letter is because I had a very disturbing appointment with my family doctor, Dr. N.S., DO, this past Tuesday (March 1). She provides my basic care meds as well as both types of imitrex, anti-nausea medications, and the muscle relaxer Zanaflex. Expecting a routine checkup, I was completely caught off guard when she swept into the room and began what seemed to be a pre-scripted speech regarding my “misuse of the system,” “inappropriate use of the ER” which she claimed should be only for life and death situations, and then proceeded to tell me how many hundreds of thousands of dollars I have cost the health care system. As I hadn’t had an appointment with her for a while, I believe she thought I was using the ER as the basis of all my migraine care rather than trying to get to the “root” of the problem, which indicated to me she is misinformed about the very nature of migraine and certainly seemed to have forgotten our past discussions of my strong family history, diagnosis at age 9, and my many many desperate attempts at finding a cause when there is simply nothing that can be “fixed” (see extensive list above) and that the best I can hope for is maintenance, and a semblance of an attempt at a decent quality of life. I tried to remind her that I am participating in a study to help in testing the closest thing migraine disease may ever have to a “cure,” the very first preventative being developed specifically for migraine, and travel over an hour once per month to do so. At those appointments, A. collects health data through questionnaires, EKGs, vitals and blood work, daily migraine diary information, and psychological assessments as well as administering the subcutaneous injection of 70 mg (a rather low dose) of the Calcitonin Gene-Related Peptide. I saw awareness flicker in Dr S’s eyes as she remembered the significance of the study, but she quickly rebounded and stated she had not received a report from the study in over a year. I don’t believe more than the initial communication about the study was part of the protocol unless problems presented themselves, which they did when A. discovered my thyroid was too low. Dr S went on to point out that every ER discharge states to follow up with your family doctor in 2-3 days, but what I did do was report each ER visit to A. and to my Pain Management clinic. It takes 6 weeks to get in to see Dr S.

She then proceeded to call me a “frequent flyer.” It was at that point I realized that my primary care physician no longer trusted me or believed me to have chronic, debilitating migraine disease. Or worse, that she simply didn’t care.

Ironically, at my last ER visit on Friday 2/26, a kind nurse explained to me again that they can tell how much pain I’m in, and that my blood pressure and heart rate, tears and general demeanor are positive indicators that I need immediate help. She even said “We do get some frequent.. visitors… whom we can tell are not sick. You very clearly are.” This nurse, even in telling me I am NOT one, was so respectful of me that she refused to even use the very insulting “frequent flyer” terminology.

But Dr S still wasn’t finished. She went on to state that the 9 imitrex allowed per month by insurance was too many, that I shouldn’t be using more than 5 per month. Every headache specialist I’ve ever seen has allowed 4 per week, and through my support groups I know that in some special cases Triptans are prescribed for daily use. At that point she brought my children into the equation by claiming I am hurting them. “What do they think, how do you think they feel, when they see their mother visiting the hospital so often?” I replied, “My daughters know that I have chronic migraine headaches and that the hospital helps me.” When I began to cry in despair and frustration, she said “Clearly you need a psychiatrist.” I reminded her that my depression is well controlled with the Zoloft she has been prescribing and that in general, despite frequent debilitating pain, my baseline mood is that of contentment.

At the appointment, I had wanted to get referrals to an allergist and a GI specialist, still, yes, looking for more root causes and connections. My request for the referral to the allergist was ignored so I did not bother to ask about seeing a GI person. She also denied my Zanaflex refill (an ill-advised cold turkey discontinuation which was fortunately remedied by Dr. M). Update: a week later Dr S emailed the Zanaflex refill to my pharmacy. I have no idea what to think about that.

I fear that Dr S will also deny my Imitrex tablet and injection refill requests, removing a significant part of my at-home migraine care which of course would ultimately lead to more ER visits. As my supply of tablets has not yet been depleted, I don’t know whether the denial will happen or not, but I am quite concerned and frankly devastated by the whole encounter. I did receive a prescription for the preventative Corgard, with which I have a good track record except that it used to dangerously lower my BP (which is at a higher baseline than it was). I felt that I needed to attempt it again so that she would see that I am still willing to try anything for a modicum of improvement, though the referrals would have accomplished that as well. I am no longer receiving the CGRP med due to the study being in its last phase but technically I should not be taking a preventative for at least three more months so that the drug company can track the effects of discontinuation. A is going to try to get me into another study as well, when she can.

***Update #3: My Imitrex injections and tablets were allowed by Dr S, but with no additional refills on the tablets and just one on the injections. This week we should be finding out whether J got this full time job at our local university, meaning we’ll be off Medicaid, and if that happens  I will be searching for a new doctor as soon as the coverage begins. I have heard decent things about another doctor in the same practice as Dr S; a risk but better than seeing her again, if the job doesn’t happen and we remain on Medicaid. The Corgard made me too tired to continue.  It has been four weeks since my last ER visit. ***

I am going to be searching for a compassionate family doctor who understands that chronic illness, particularly the “invisible” type, has many ups and downs over a lifetime, and that I am doing the very best I can for my daughters, my husband J, and myself. No one wants to live a life of pain. No one wants to seek emergency treatment. S’s use of the term “frequent flyer,” her refusal to listen, the way she used my children against me, her insulting insinuation that I need a psychiatrist all cause me to worry that she may attempt to flag my file in a way that will cause me to be denied treatment at WC Hospital, the only ER in which I’ve felt safe, respected, and assured that the medicine and IV fluids I require at those times will be administered.

So I beseech you to please continue delivering the emergency care I occasionally require. I will be looking (with much trepidation) for a new doctor, will continue searching for new solutions, and live my life the best way I can, which is to treat my migraines as they come on rather than to live my life in bed without adequate pain relief. That is without a doubt what would hurt my young daughters the most.

I don’t know if you are technically Dr S’s supervisor, since she is affiliated with the hospital, but this is my first step in lodging a formal complaint, as I feel she may well have broken the Hippocratic Oath of “do no harm.” I would like to report it to the State as well.

A, the research nurse, will also be sending a letter on my behalf, and I am hoping to have a US Pain advocate do so as well. I would also be happy to ask the Theatre Board President, the Curator at the Museum, or the owner of the Dance Studio to write letters supporting my character if that seems like it would be helpful.

And again, I want to express my deepest appreciation for the consistently compassionate care I receive at WC Hospital, where I am treated like a human being in severe pain, not just a number with an expensive dollar sign attached. Mr K, you and your hospital are to be commended. It is not possible to overstate how much the care, concern, and loving kindness of your staff means to me.

Most Sincerely,

lady migraine