Blind Study Portion Over
Back from Cleveland, what a trip this one was! The blind study portion of the test is over, and if you haven't guessed already I have had a working occipital stimulator from day 1. The time frames for pain relief are right in the ballpark for other recipients that had working stimulators also. The nurse from St. Jude said it was a difficult study to "blind" because for ethical reasons the stimulator trial was a real trial, and then if the person got the non-working copy they had to try to persuade them that it was working, and, well, you can feel this so that was pretty hard to do. I am the last person accepted in the study, and they probably will start accumulating data now, before the official finish late 2009. Looking forward to seeing the findings.
My disability scales were much better, showing less disability, and my pain scales were much better on average. I had a very good short visit, and Lilly the Cleveland Clinic study coordinator said she would see if I could just do the last visit over the phone in three months, which would be fantastic so I don't have to go to Cleveland in the middle of the winter. Brrrrrr. Apparently I was one of the only participants who kept up the headache diary daily. I thought that was part of the deal! I was able to hand that sucker back in, thank goodness! I had to use a stylus to type in phenergan, benedryl, and vistaryl over and over and over again, which was a pain in the patootie!
I was at a client hospital working this week, and did pretty good. The Headache was acting up on day two, but it was a short day so that was fortunate.
Traveling back from Cleveland was a nightmare! The Headache decided to flare up during my seven hour wait for my flight. I was already through security so didn't want to go through that again, so I took a combination of drugs to put me out for a few hours while the pain magnified. HOWEVER, the airport only had chairs with arms at the gates in my section, no benches to lay down on or chairs together without arms. I tried sleeping sitting up, I tried sleeping sitting against the wall, and finally gave up and went to sleep on the floor next to the wall - hoping I wouldn't get run over by somebody's rolling luggage. The pain had lowered my body temperature and I had the shakes - part of the process, so no telling what my fellow passengers thought. At least I was able to control the worst of it. I had caused this myself as I took the train to a spot about a mile from the Clinic, and walked to the Clinic, and then back to the train. Physical effort is still causing me problems. I am going to have to relearn where my limits lie. Two miles in the span of a couple of hours must've been too much.
In the interview with the physician, we discussed the fact that I still am having some severe pain plus still having the nausea, eye tearing and light sensitivity when the pain was mostly under control. He asked if I had cluster headaches, and I told him one of my many diagnoses included cluster headaches mixed with migraines and a possible cluster headache variant. I told him that his guess was as good as mine - I could pull any headache diagnosis he wanted to out of the hat and claim it as mine at a point of time. He laughed, and said that my guess was as good as anybody's! Wondering if they see this pain remainder in cluster headache sufferers who receive stimulators. Mine are like swift jabs of a heated icepick stabbing at my brain.
I have an appointment October 6 to see a physician at Washington University in St. Louis concerning radiation after effects. I had emailed a specialist I found in PubMed that had an interest in radiation injury to see if he had any direction to point me in, and bless his heart he booked me an appointment with another specialist. I doubt if I will learn anything new, but if I there is something I can do to be more functional and have less pain I am going to try to pursue it. It goes to show, polite inquiry to unknown specialists can get results! Wash U/Barnes Jewish hospitals in St. Louis are nationally ranked facilities, so I have confidence in their abilities. However, again, they are probably out of network for me. I suspect because of the short time span I will need to gather medical records to take with me. I find this a gesture of futility because with neurologists they never take the time to really review them, but maybe these internal medicine specialists will take the time to look.
Lost day today, as I got home at 5:00 AM - it took me five hours to drive back from Kansas City (normally a three hour drive) because of The Headache - just woke up a little while ago. Took some medication just so I could whip on The Headache again, which contributed to the looooong sleep. Looking forward to a good weekend.
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