The (James) Gist

I am sick. My head hurts all the time. Sometimes I can do nothing but think about it while laid up in bed for hours at a time. Occasionally I can function completely normally and only notice the pain if I stop to think about it. Usually the pain is always on my mind and I just try to do what I can to ignore it. Sometimes that works. Sometimes it doesn't. Almost all of the time I can play things off as if my head didn't hurt at all. I am willing to wager quite a bit of money (that I don't actually have) that I am better at faking my way through things than anyone I know. And I would wager more of that imaginary money that my head always hurts worse than the headaches (most) people sometimes complain about. All i really know is that if I ever become rich I will surely squander most of my earnings because I will make ridiculous bets in Vegas. And that you develop a bit of a tolerance for pain after six years of constant headaches. I am done being self-righteous now...hopefully.

I don't have migraines. I have no aura or nausea (except when in extreme pain) and the pain is not mainly on one side of my head. The pain resides on the top of my head and above my eyes, on my forehead. It is much harder to function with the pain when tired or depressed. Six years ago I had abdominal pain, nausea, and vomited for two months before those symptoms dissipated. Midway through that process I started developing headaches as well. They did not go away. Actually, they got worse as time progressed. The abdominal problems were likely caused by some sort of a virus but whether or not my headaches are connected to that virus...well no one really has any idea. I have been officially diagnosed with the more malignant version of New Persistent Daily Headache. No, i did not make up the name myself. And yes, I know it is actually just a description of my condition. If you Google NPDH the first website that appears gives a fairly accurate summary. The last sentence on this website is "Unfortunately, at this time, there are no treatments specifically outlined for NPDH." In the end, that is all you really need to know but...

My headaches have never changed location and feel like the inside of my head is pushing out against my skull. I have had MRIs, spinal taps, CT scans, EEGs, EKGs, an endoscopy, and allergy testing. I have no idea how many times my blood has been drawn for testing.

I have seen the best headache specialists in the world, talked to six or seven psychiatrists, tried magnetic therapy, and undergone acupuncture treatment from a small Asian woman who spoke broken English. I have tried self-hypnosis and meditation and biofeedback. I have seen my dentist about my teeth and my optometrist about my eyes without any results.

I just finished seeing a chiropractor for the past six months. A friend brought holy dirt back from a trip she took. I rubbed it on my forehead. Seriously. I have been on diets that did not allow for chocolate, cheese, or anything fermented. I have been on a medication that made me gain thirty-five pounds and a medication that had me fifteen pounds too skinny. I have been on dozens of medications that had no effect. I have tried a medication that caused me to sleep for eighteen hours a day and a medication that caused unfathomable pain in my head for a couple minutes a dozen times a day and resulted in spasms and incoherent yelling. I can remember being vaguely aware of my surroundings but had very limited control over anything I was doing. My mom has probably never been so freaked out. The first time the dose of that drug was raised I lost all comprehension abilities. Everything I saw might as well have been Chinese. I could not read. That was actually more disconcerting than the pseudo-seizures that followed a month later. Needless to say I am allergic to Topamax. And that was not the finest winter break of my life.

I have undergone complete psychological testing; the highlights of which were the Rorschach (ink-blot) test and a 567 question multiple-choice assessment to determine just exactly how crazy I was. Upon completion the doctors told me that I was not making up my illness for attention and that I was suffering from depression. Unfortunately I did not tell them they were suffering from a case of Obviousitis. That would have made a good story but at the time I was apparently more intent on being polite.

I have seen a physical therapist who also specialized in massage. I have seen men and I have seen women...but I have never seen a black doctor. That is probably the real issue here. If you are reading this please get a life but also let me know about any black guys you know in medicine. I will accept tribal healers from Ghana if necessary. I have worn shoe inserts and taken various vitamins and supplements. I apologize for forgetting things I have done and having to end the list here...hopefully you get the picture. I have a reasonably good memory but it is not exactly photographic. Some of the more unorthodox methods may have slipped into the recesses of my mind at this point.

There have been only two things that have ever helped alleviate the pain. I can go to the emergency room at any point and ask for a certain combination of steroids and IV treatment with the knowledge that my headache will eventually be gone with continuous medication. The first time I went through this was in October 2003 and my headache was gone within two hours and stayed away for nearly a week. The last time I went through this treatment it took three days of overnight stay in the hospital for two or three days without pain. Other times I have left the hospital exhausted after spending most of my day in the E.R. and taken a nap upon arriving back home only to wake up with my usual headache. The E.R. is no longer a viable option but I had higher hopes for Dr. Bernard Filner. He is a general pain doctor who focuses on trigger point therapy. When tense, certain points in muscles around your body will trigger pain in other places. I had about a dozen active trigger points on my neck and shoulders that he worked on. He loosened them with laser therapy and from June 2006-October 2006 I only had a headache once a week and it was mild the majority of the time. As my headaches grew more frequent that fall I resumed more consistent visits to Dr. Filner but his treatment only stopped the pain for the rest of the day and left me so tired that I only felt marginally better. I continued to see him off-and-on for the following two years but at no time in the past six months have I visited his office and left without a headache. He had been my one real hope. Filner was the only tangible evidence I could point to and be optimistic for future success at managing my headaches. That is no longer the case.

So I am now looking at a future in which I may have to manage on my own. There are always new doctors to see and old doctors to re-visit but perhaps I need to figure out what I can do myself. I should take more responsibility in handling my own life in spite of mitigating circumstances and find out where my limits are. After the debacle that was spring semester of 2008, it is necessary I do well in school for the simple reason that it is a waste of time and money if I do not show that the repeated failing of classes last semester was a one-time deal. And as an individual going forward, it is important that I can prove to myself that I can almost manage a normal life. So I am pulling out all of the stops. Maybe this blog will serve its' purpose and be of therapeutic value. Maybe it won't. But I am trying. Because it is the second week of school and I have not attended class the past two days. Not because I chose to blow it off but because i could not get out of bed until three or four in the afternoon. It was all I could do to get the reading done necessary to complete my homework, get out for a meal or two, and have brief social interaction with some friends to avoid isolation and insanity. And so I have spent two hours writing on a blog that no one will ever read because it is nice to vent sometimes. The dirty laundry needs to be aired out. Speaking of which, I need to do my real laundry. Which, if aired out, my roommates will not appreciate nearly as much as this blog. That is right..."Sick With It"- Better Than Your Dirty Laundry...

I know this semester will be hard. Because in order to be productive in school I also need to stay happy and somewhat active outside of classes and academics. I have to walk the line between being a bum, getting depressed and lonely, and not getting anything done and trying to live a normal life of school, friends, sports, and partying that would be acceptable for most people but simply leave me burned out by the end of September. I don't actually know if that line exists for me. I have had quite a bit of trouble finding it. But maybe this blog will help me work some things out. That is the real idea behind this. I don't have any insights or conclusions to make here. But I guess this would normally be the place for them. The End.