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.

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

But You Won’t.

I’ve been absent. I don’t really know what to say about it. While my participation in the CGRP Study has been amazing, and I have longer pain-free periods, somehow I end up in the ER more often. Everything in my life is changing. J had to resign from his job over unfair labor practices and while I believe he has a good plan for finding something new, I’m terrified. I don’t want to rely on others anymore for the things we need. I want my daughters to feel safe and secure. My baby is about to start first grade, a milestone which was extremely hard for me when I went through it with her older sister. Soon, I turn 42. I seem to be losing friends, or at least losing the closeness I shared with those friends, faster than I can make new ones. Who am I kidding? There are no new friends on the horizon for me.

 I want to feel motivated. I am still volunteering at the museum, working on my Etsy shop (www.Etsy.com/shop/WindInTheDoor)  and a member of our Youth Theatre advisory board, all activities I find worthwhile and rewarding. I thought J and I were going to go back to school (together) but scrapped that idea when a week of playing various ghosts at Hogwarts Camp and then a theatre conference landed me in the ER, a migraine from which I still haven’t fully recovered. Attending classes and studying doesn’t seem to be in the best interest of mollyfing Medusa. So I am still collecting meager SSI and have no idea when I’ll be able to work again. The Etsy shop is doing okay, especially for having been open only 6 months, but I wish it would do better so I could feel I’m contributing something.  I am doing everything right with the shop, and am continuing to try to do it better, but right now everything feels hopeless. 

The kids are growing up. The kittens both died. The house looks like a bomb hit it. There’s no way I’m making it to the County Fair this year. I’m having a hard time getting X interested in practicing her monologue for the fall play which means she might not get a part and will be beyond devastated. Zo’s behavior is getting tougher to deal with as she can’t handle her own negative feelings without trying to hurt others emotionally and her extremely sensitive sister exacerbates that issue. J doesn’t have a job. I can’t have a job. I can’t even get out of bed right now.  

 
Welcome back, LadyMigraine. You suck.

The Magnificent Migraine Community

Searching for a meme or pertinent photo about #MHAM on Facebook a few minutes ago to use for this post, I happened upon my own status update from last year, sharing a link to the AMHA blog and stating “a little frustrating that more migraine sufferers aren’t participating in #MHAM.” Ironically, I am writing this entry because a fellow blogger checked in on me, offering extremely kind words of support on my very sad last post of over a month ago, because this year I haven’t been participating, and she was worried (thank you, Skylar). 

The migraine community is a beautiful thing. Most of us haven’t met in person, but we support each other like family. Better than family in many cases. Most of us are chronic (of the bloggers I know best, anyway) and the more frequent migraines become, the more stigma there is, meaning a lot of sufferers don’t actually get support from their own friends and family. It can be incredibly isolating. Since I can no longer work and am on Disability, I am quite lonely and have particularly felt lonely this past month. And I am even one of the lucky ones with a supportive partner, caring extended family, and a few very good, kind friends. 

Since our beloved almost four year old (and 60 pound) collie mix rescue, Asia, accidentally killed our adorable new baby kitten Onyx right in front of me, a horrifying, devastating incident which I could have prevented, I have felt a little broken. Due to the CGRP study, I believe my migraines are better than they have been any time in the past five years. But lately I haven’t been able to express myself well, or do anything more than what is absolutely required.  And, in the open label phase of the study, I seem to be getting all the other symptoms of migraine without severe (or even moderate) pain, which is still debilitating as well as being confusing. Right before we went on our short, whirlwind vacation on June 15, I ended up in the ER, twice, with the weirdest migraine I’ve ever had – I vomited first. Before the severe pain but after two weeks of fatigue, vertigo, phono/photophobia, nausea, allodynia, brain fog, and irritability. I threw up and still wasn’t sure what was going on and then two hours later I was at an 8, and the ER cocktail didn’t work except for about an hour of level 5 pain rather than 9. My second visit the doctor wanted to admit me, which is rare these days and I would have jumped at the chance (my last admit was in 2012) except I would have missed X in her musical, as well as my  pain management appointment right before our trip. But the doctor took my suggestion of another dose of pain meds and a prescription for imitrex injections, which I was out of with no refills, and I did break the headache on my own at home. So doing much better than recent years? Still no picnic.

Undeniably though I am improved this year over last year, when I hadn’t yet met my wonderful pain specialist and had just had the worst headache of my entire life which caused me to get an unofficial secondary diagnosis of cluster headaches and an oxygen machine, but no narcotics, which are controversial but DO work for me (every migraineur is different, which my neurologist refused to admit). And yet last year I published a blog post for Migraine Awareness Month every single day.

So that is why Skylar was worried. And I have no explanation for my silence. I feel like I’m in an emotional cage or a deep well. The walls are high and impossible to climb. I give to my daughters but have very little left for anything else. I’m better, but I’m not. If it’s not one thing, it’s another. And I’m tired.

Yes, Migraine Awareness Month is an opportunity for us in the migraine community to be heard, like I stated last year. And I’m so glad I still have that community around me, even though, hopefully only temporarily, my own voice has gone quiet.

  

  

  

Migraine365: The Sumatriptan Series

In Fall of 1992, I believe, or maybe Spring 93, I took an Intermediate Poetry class with an instructor and poet named Tom Andrews. He was bald, soft-spoken. I don’t know if he encouraged me, after a number of missed classes and my explanation, to use my illness as muse; but then, I already had, in my fiction class and in my first poetry class. I felt the drive even then to make people understand: these “headaches” that had paralyzed me, left me shaking and bedridden and vomiting my entire life, when some people just took Tylenol for theirs. I was already using pain as art.

My first migraine poem was called “Sumatriptan” after the magical new drug whispered and passed between doctors and neurologists in hospital hallways like code. I was able to get my hands on this drug early, in tablet form, before it was accepted by the FDA, by driving the short distance to Canada. It was 1992. My first dose, a cylindrical wafer on the tongue, truly was a miracle, leaving me gasping in shock with tears streaming down my cheeks as every doom-spelling symptom vanished, the blind spots, the nausea, the weakness, the stabs of pain already emerging. 

As my experience with Sumatriptan grew, so did the poems. It was soon accepted by the FDA as an injection, (I still remember the Glaxo Auto-injector kit) which my 19 year old self ridiculously refused to use at first. “You will use it,” my mother snapped. And I did, with help from friends and boyfriend, and copying the numbered instructions down as another poem. “1. Remove Blue Cap From Syringe Case.”

Tom Andrews liked me. He must have. He graded my portfolio glowingly, writing, “You will have to sign your first book for me.” His own book of poetry, his second, came out in 1994, called “The Hemophiliac’s Motorcycle.” He was one. Who raced dirt bikes. A section of the book was called “The Codeine Diaries.” They were illness poems. He too had turned his pain into art.

Tom Andrews ended up giving me a B+ that quarter, which devastated me. When I went to ask him why, he intimated I may have done a bit too much flirting with my Nietzche-reading, hair-flipping writer friend in class and not enough active workshopping of others’ poems. Participation, bah. Would always get me.

I was very sad to hear that Tom passed away due to complications from his hemophilia in 2001. Around that time, J and I were getting married, having had our first art show collaboration a year before at the coffee shop / bookstore gallery where we’d met. “The Sumatriptan Series.” The first page of the series was published tonight on Migraine365. When J pulled it out last week, seeing it again took my breath away. 

Tom Andrews’ collected works, published by Oberlin College Press, is called Random Symmetries. I, myself, love random symmetries, and see them as signs from the universe that I’m on the right path. Another one I thought about as I worked with filtering and sharpening the Sumatriptan piece online was that I did have access to that landmark medicine earlier than most American migraineurs, having had a forward-thinking doctor, willing parents at $20 per pill, and the right geography. And now, just over 20 years later, having barely outlived Tom Andrews (he was only 40 when he died on a trip to England), I once again have access to a landmark migraine medication before most sufferers. The CGRP medications are creating more and more excitement, making more news, as success rates mount with few side effects, and it’s a preventative. I am so lucky to be participating in my study at MHNI, which just entered the open label phase. I have had one subcutaneous injection of the real thing, and 3 previous possibilities during the double blind phase. You know what I did today? I sat for 3 hours at the museum sorting dusty, 100 year old sheet music in a dimly lit room. Then I went to pick up prescriptions and bought a Reese’s Peanut Butter Egg, and I ate it in the car on the way home, while “Happy” was playing on my stereo, and the sun was shining as I crested the overpass and drove back into my small, fog-brightened city. It was freaking delicious.