This past Wednesday I visited the Jefferson Headache Center at Thomas Jefferson University in Philadelphia, PA. My neurologist and headache specialist, Dr. H., had originally begun trying to get me an appointment there in January, and I was able to secure an appointment in March for July 17th (to give you an idea of the wait time.)
They mailed me a thick packet of paperwork that asked all kinds of questions about my diet, medical history, headache history, medication history, sexual and obstetric history, and sleep patterns to fill out and bring with me to the appointment. I also had to take my medical records and any test results- CT scans, MRIs, my lumbar puncture, etc.
The appointment is broken into four distinct parts so I will talk about each in succession prior to describing my diagnosis and treatment plan. I paid approximately $410 for the psychological and assessment portions of the appointment, some of which I may submit to my insurance company. My insurance company covered the medical portion, however I may have to pay a specialist copay.
The MMPI
Upon arrival and check in I was given a variety of assessment forms to fill out regarding pain, depression, and anxiety levels along with the MMPI-2 short form, which is a personality test used across the country. The MMPI is most commonly known to police force candidates, and is a 300-600 true-false questionaire that allows an MMPI-trained Psychiatrist to determine things like how much of a hypochondriac or psychopath you are. I actually completed the MMPI throughout the course of my 4 hour appointment, working on it when there was down time from meeting with people.
I was given a receipt that I may submit to my insurance company.
The Nurse Practitioner
Before meeting with anyone who determines a treatment plan or diagnosis I met with a Nurse Practitioner who took my medical history and discussed the information I provided on all of the paperwork I mentioned above. She did helpful things like saying, “We’re probably going to have to admit you,” etc.
There’s nothing worse than being in a strange city, five hours from home, and suddenly finding out you might be put in the hospital.
Other than that she did the normal height, weight, blood pressure fun things. I have really bad white coat syndrome on top of all of my dislike of new places and situations… but my BP was within normal range. Dear Inderal, thank you.
The Psychiatrist
There was a great deal of time in between meeting with people and I was shepherded to and from the waiting room several times. Eventually the Psychiatrist called for me. I think that was my favourite part because his office was dimly lit.
The Psychiatrist had a few apparent goals. First, he needed to establish if my symptoms were at all related to depression and anxiety, or to my menstrual cycle. Second, he needed to gather statistical data about my symptoms during pregnancy and breastfeeding. And third, he needed to establish if I was using an exaggerated pain scale or abusing my pain medication.
He determined that my condition is not caused by stress or depression and not linked to my menstrual cycle. He also established that my use of pain medication is well within the “safe” zone (used under ten times per month so there is no built up resistance to pain medication or chance of rebound symptoms prolonging my condition.) He also determined that I am using the pain scale appropriately and that my pain is disabling.
He said that it was good that I’m seeing a Psychologist to help cope with what I’m going through, and we also talked about the recent loss of my mother.
The Neurologist
The neurologist that I saw, Dr. M. had actually lived in my city for a time and so he asked me about streets and areas he remembered. He didn’t make a lot of eye contact once he learned that I was autistic, and I suspect that he might be on the spectrum as well. He seemed preoccupied with touching base with my beloved Dr. H. to find out if she goes to “the meetings,” which I can only assume are headache conferences or something.
He did the usual neurological checks and I am still showing less response on the left side of my body reflex-wise. He didn’t seem overly concerned. He checked out my MRI disc and said that my brain was nice and symmetrical, and that I don’t show much scarring from my childhood seizure disorder.
As with my appointments with Dr. H., we spent most of the appointment talking at his computer while he made decisions about medications and treatments and such.
If you have any specific questions about my experience, please comment or feel free to e-mail me at brainhatesme@gmail.com.
The Diagnosis and Treatment Plan
Diagnosis:
Transformed (chronic) migraine… which is essentially intractable or status migrainosus. It’s all the same lingo for “long ass headache that hurts a lot and makes you feel super shitty all the time.”
OR
Hemicrania continua (HC)… which is “much less likely” according to Dr. M. but I am really hoping is the thing I have. HC is essentially a painful one-sided headache that can have migraine-like symptoms along with eye redness, blurred vision, etc. It just lasts forever. There is no cure.
The REASON that I hope it is HC as opposed to the more likely diagnosis is because there is one specific treatment for HC, and if the treatment works, it’s supposed to be like “a religious experience” (Dr. M.) and although I will have to take the toxic medication for the rest of my life, I won’t ever go through this again.
Fingers are crossed for HC.
Medications:
Indocin (Indomethacin) – The treatment for HC which I will be taking at a dosage that increases every three days until I have the “religious experience” or hit 200 mg a day, whichever is first.
Compazine (Prochlorperazine) – An anti-nausea medication which is supposed to also help with the pain and is more effective (so they say) than Zofran and Phenergan
Midrin – Which I already take for pain and am to continue to limit to less than 2 days a week to prevent rebound symptoms
DHE (Migranal) nasal spray – as a rescue medication. I can take up to two kits per day for three days. This also comes in an injection I can do at home which is stronger, but if I don’t need the stronger stuff why use the stronger stuff. I have yet to pick this up from the pharmacy because it’s $150.00 with my insurance.
Topamax (50 mg daily), Inderal (80 mg daily) and Clonazepam (1 mg daily) – all medications I am currently taking.
Long-Term Treatment Plan
Admission to Methodist Hospital in Philly for 5 days to receive DHE, lidocaine and other fun things like trans-orbital and occipital nerve blocks and then see what the hell happens.
That is, if I don’t have Hemicrania continua.
Come on HC!!!!!
My Brain Hates Me 