A friend of mine is (figuratively) banging his head against a brick wall. The results are similar to what they would be if his activity were literal.
Interestingly enough, his medical condition began quite misleadingly. Eventually his doctors figured out that his symptoms of disorientation, dizziness, and weakness were the results of “silent” migraines. While migraines are most commonly associated with acute, debilitating headaches, this is not the only case. The headaches might be absent, while the victim nevertheless experiences the distorted vision and weakness that migraines induce.
The diagnosis of silent migraines resulted in my friend's introduction to the extensive pharmacopeia of anti-migraine medications. Problem solved!
Sort of. Temporarily, anyway.
Things began to change. For one thing, my friend's prescriptions worked for only a limited time. As he became inured to the therapeutic effect of one drug and the symptoms ramped back up, the doctors would move him on to another. He was now working his way through the list of drugs, wondering how long this could go on. For another thing, the pain showed up. Classic, stabbing, excruciating headaches. “Silent” no more. Fortunately for my friend, the sharp, stabbing headaches are intermittent—triggered by loud noises (he suffers from hyperacusis). Only the dull pain in his head is constant, day in and day out (and denying him sleep, because there's no longer any such thing as a soft-enough pillow).
Now he was getting passed around in the medical community. The UC San Francisco headache clinic looked into his case and shot him up with drugs to “reset” his pain level. It failed. UCSF was on the verge of confining him to a hospital bed for a days-long infusion of a drug that required 24-hour monitoring when a bad reaction to a milder form of the medication provided a very serious contraindication.
The standard migraine drugs were used up and then recycled at higher and more dangerous levels. Relief was still merely temporary and palliative. His doctors began a series of off-label prescriptions (where “off-label” means using medications to treat conditions for which they are not formally approved). It was, in a word, a series of experiments. Each experiment lasted as long as a month or two. Much shorter, of course, in the case of hallucinations or other serious reactions. Recently the doctors started mumbling about using botox, but I'm not sure what that's all about.
But that was merely prelude. This year his condition escalated in a completely unexpected way. Let him tell it in his own words. It's a total mystery:
In early March I started to experience swelling in the front center of my neck. A couple of days later there was a small lump on the back of my neck. The lump in the front of my neck has continued to swell and the swelling has grown into my jaw. This past weekend a new, fairly large lump has appeared at the intersection of my jaw and neck just below my right ear. The swelling in my neck has put enough pressure on my neck to cause difficulty swallowing, occasional difficulty breathing, and the loss of my voice. (I can only talk in a whisper.) I have also had swelling in both underarms and in my groin, but the doctors can’t feel anything in those spots that would warrant more testing.While lymphoma has been suspected because of the swollen lymph nodes, nothing has ruled it definitively in or definitively out. The constellation of symptoms is totally confusing.
Blood tests suggested that I have hypothyroidism, and I’ve been taking levothyroxine (50 mcg/day) for over a month to combat that potential cause. The levothyroxine has lowered my thyroid stimulating hormone level to normal, and I’m still taking it per my doctor’s orders, but that drug hasn’t lowered the existing swelling, kept existing swollen areas from growing, or prevented new growths from forming.
I’ve had three ultrasound tests of my neck and though these tests have found a slightly enlarged lymph node that hasn’t grown or shrunk in the subsequent two tests, the node is too small for a biopsy. I’ve also been to the ENT and to a gastroenterologist without any success or insights. My primary doctor is now at a loss about what to do next.
Any ideas, anyone? Know anyone who might? Perhaps you have a better clue than any of my friend's doctors. They keep passing him back and forth like a hot potato, cheerfully suggesting to him that his life isn't really at risk because they can always resort to intubation if his throat becomes too constricted to permit adequate breathing. It's a comfort, isn't it?
Please feel free to pass this post along, link to it, or otherwise bring it to the attention of medically savvy professionals who can solve this puzzle. It's a headache—and then some.