Not Your Pain in the Neck

Dear Doctors, Nurses, ER Staff, Friends, and Family,

I am a 52 year-old migraneur who suffered my first migraine at the age of 21.  Over the last thirty years, the headaches have become more severe, more frequent, and, if untreated, more incapacitating.  The only time during this period that I have been headache-free has been during my three pregnancies, certainly not a viable solution, and yes, doctors and specialists have explored hormone therapy to no avail.  I have seen several neurologists, undergone many CT and MRI scans, had allergy testing and thorough blood work-ups.  I have practiced mindfulness meditation, visualization meditation, and biofeedback.  I have received massage therapy and chiropractic treatment.

Working with various physicians and said neurologists, I have been prescribed a wide variety of prescription analgesics, anticonvulsants, antidepressants, antihistamines, decongestants, anti-inflammatories, benzodiazepines, muscle relaxants, phenothiazines, steroids, triptans, and other prescriptions medications.  None eliminated my headaches and after all these years only a few have me able to carry on with my daily routine as much as possible in the face of daily pain.

When I have a migraine that spirals out of control - meaning the pain cannot be controlled by the medication I have available to me at home - I have to go the hospital emergency room for treatment.  One of the questions I am asked is to rate my pain on a scale of 1 - 10, with 10 being the worst pain ever.  I reserve 10 for childbirth, live daily usually at no lower than a 4, and head to the ER when I hit an 8.  Until the last few months, I have been able to control the migraines and keep these visits to once a quarter.  Now, whether it is a hormonal change or an organic cause, the migraines are controlling me, and ER visits have escalated to twice a week to manage the pain.

Next week I will be heading to a leading headache clinic where I am hopeful that the multi-disciplinary team there will finally be able to help me break this cycle and manage an approach that will give me the tools (medicine and lifestyle) when I leave from my extended stay to be, if not headache-free, at least pain-manageable.

However, the last few weeks, as I've been in and out of the ER and dealt with doctors, nurses, ER staff and even my own specialists in follow-up care, I've realized the lack of understanding among many regarding migraines.  A migraine is not just a headache.  A migraine is not just caused by stress.  Loud noises and lights are very distressing to migraine sufferers - nurses and doctors, please take note of this when you talk, open/close doors, use lights in rooms.  I can still hear you if you talk softly, and my head won't pound as much nor will my nausea swell should you use your normal or loud voice.  A migraneur is not a junkie; I do not want to be in the ER.  I wish more than anything that the medicine I had at home had handled the migraine.  It didn't.  Lecturing me about the dangers of addiction to I.V. analgesics when I am at a pain level 9 is not helpful, especially when you are well aware that I am scheduled to go inpatient at one of the country's top headache clinics in a matter of weeks.  On the other hand, while I am open to alternative medicine (and realize the clinic I will be entering embraces the best of cutting edge western medicine as well as the healing arts of eastern approaches), again, when I'm at a level 9, please don't share with me that I must get my chakras in balance and find a good Reikist (as supposedly learned from Wayne Dyer and Tony Robbins while visiting on Fiji), just give me the meds I need to break through the migraine.

Realizing that a migraine is not caused by stress, stress can be and often is a trigger for migraines.  That being said, I understand that no life can be stress-free, and working on stress management will undoubtedly be a priority - and recognizing stress triggers - during my stay at the headache clinic.  I expect life will be different when I return.  I hope life will be different when return.  I hope life will be better  when I return, and I hope my family and friends will be patient with me.

Peace.