Saturday, February 7, 2009
After Headache Day #13 2009 Home Again!
Recovering from the Extreme Cold
Back home after making the trip to the Cleveland Clinic. One day to drive up (with a bad snow storm for the last hour of the drive) one day for medical appointments, one day to drive back. The weather was very very cold - on Thursday I woke up to zero temperature with a -20 windchill. It's been about 20 years since I was out in weather that cold.
Thank heaven for small favors - Wednesday, the day I drove up was a great day. Clear skys and clear roads almost all the way to Cleveland AND The Headache was behaving itself. The Belly was in rebellion so I resolved to not eat much for the next few days to see if that will help.
Thursday went to the clinic, and was seen by the pain management team. After I spiel off all the things that are wrong with me I feel guilty because two different people - a nurse and a doctor - have to type up notes with all that in there. Type Type Type. Sigh - and especially when I have to say pancreatic billiary sphincterotomy - no not sphincterectomy that's a different operation - sphincteroooootomy . Poor folks - and of course the question is always asked - are you depressed, and I say "No, but after that list I just gave you of what's wrong I'm starting to think I should be!"
The doctor I had the appointment with came and put pressure on what I am guessing are my occipital nerves. On the left side, it was quite painful and zinged up the middle of my head and around by my left ear. On the right side it didn't really hurt at all. I was told after further description of my headaches that I was a good candidate for an occipital nerve stimulator implant. Yeah!!!
I was then told that this use for the stimulator is still felt to be investigational so my insurance probably won't pay for it, BUT I might be eligiable for a study that would pay for it if my insurance wouldn't. The study coordinator came in and questioned me closely and I ended up signing up. I won't know if I am eligiable for a least a couple of weeks.
The headache disorder I have (hemicrania continua) should disqualify me from the study, but the doctor who saw me assured the coordinator that I would qualify. Not sure if that meant my diagnosis is wrong, or that I am in such bad shape they had pity on me! I had to take a psychological test and interview first before anything else could proceed. The doctor that did that was kind enough to work me in after 5:00 that afternoon so I could head home the next day. I should know in a couple of weeks what the study committee decides - am I a keeper or a tosser?
The Headache decided that day that all the walking I was doing was going to rile it up. Physical activity is a trigger for me - the more I walk or sweep or shop or drive the worse it gets. Because The Headache had started its march that morning when I parked the car in the very large parking garage of course on the wrong side of the clinic complex. I was able to traverse the four blocks to the building I needed to be at indoors except for the last block. That was a windy block indeed! Same going back.
I paid my parking fee of $10.00, then went to look for my car in the parking garage. I couldn't find it! There were a lot of cars that looked like it, and as I walked in the cold cold garage The Headache got steadily worse making it harder for me to recognize the durn thing. I finally went to the top story (7th floor) and walked it down towards the bottom, checking for my car on every level. I found it on the second to bottom level where I had walked by it four times before. THEN by the time I got in the thing I realized that I had lost the paid parking voucher. To get out of the garage I had to pay the $10.00 dollars again.
I made my way back (15 miles) to the hotel, and then after getting an appointment for the psychology test drove 20 miles out to that clinic. The Headache was getting steadily worse. On my way back from that appointment in the dark I went the wrong way and ended up 40 miles further out of town. I finally figured out I was going the wrong way, so I turned around and drove back 60 miles to my hotel - making that a 120 mile round trip. I was able to take benedryl/phenergan to knock The Headache back a notch or two and go to sleep. I should never drive when The Headache is gaining control but there I was gadding about some distant suburb of Cleveland thinking I should have been downtown by then! I was very disoriented but it all turned out OK.
Augie and Wilsy were quite happy to see me come home. Augie had to run run run to show how glad he was to see me. Wilsy of course is just sitting around griping at me in her old kitty voice. It's good to be home!