So in the interest of not reproducing an hour-long talk in one post, I'm probably going to keep this a bit shorter than what I did in Atlanta, but feel free to ask me anything about it!!
For starters, the background: I have two headache types. The first, New Daily Persistent Headache, is essentially a type of chronic migraine that I got on January 17, 2001 when I was 20 years old as a sophomore in college. It has never left. The clusters came on in roughly the fall of 2003. In the spring of 2003, I was in a figure skating class and had a really bad fall with a concussion. After that, my "usual" headache wasn't the only type I had, but it took quite some time to discern what it was I did have. At first, I had excruciating headaches that would come sometimes up to 20 times a day or more, and would only last for a few minutes. I definitely couldn't sit still or relax during these, but they were brief - but then they came back a lot. As time went on, these seemed to morph into what became my cluster headache pattern for several months: attacks every day at 5pm, 7pm, 9pm, 11pm, 2am and 4am. I was in my 5th and final year at Penn State at the time, majoring in music - it was taking me longer overall because of the headaches and the problems that I'd had come with them. Each headache lasted 45-90 minutes, and even though there was a start/stop, it was very hard for me to describe them to my neurologist when I first went to see him as I still had headache time in between - from the other type.
I had actually already been to this site before I got diagnosed, and some wonderful people here helped me to sort out what was going on, and I was able to finally get the help I needed from my doc, who is a really great headache specialist. It only took time to diagnose because I wasn't presenting in a normal fashion and I'd already been going to the center for the other headache type.
With the history of both headache types, I was inpatient in the hospital a lot to try to break them up and get them under control so I could go about school. After the amping up of verapamil to 960mg per day, I no longer got them on the 5pm, 7pm, 9pm, 11pm, 2am, and 4am schedule anymore. I had less, but they were random. I'm not sure if that was better or worse - but I think better, since I actually got more than 2 hours of sleep a night sometimes...
Sadly, the verap at high doses tanked my blood pressure, sending me to the ER at least once back at school and creating problems for me many times aside from that.
In Atlanta, I showed slides of all the medication and therapies I tried to bring both headache types under control. There were about 5 slides full of lists of mainly drugs tried. I failed almost all of them or else they had such bad side effects that I had to stop. I took prednisone tapers at one point every 6 weeks or so, plus I had received IV steroids in the hospital on numerous occasions. I ended up getting avascular necrosis, which is a loss of blood supply to the long bones (for most, in the hips - for me, in the knees) that results in a dying of the bone and pain. It can lead to needing joint replacement - I was diagnosed with that at age 23 when I had just started nursing school and knew I was going into a career where 12 hours on your feet was a common occurrence.
I could use oxygen, but for someone with my lifestyle, oxygen isn't always very convenient. For one, I am a neonatal nurse, which means I take care of babies who are extremely premature and/or very sick. I can't wait for a cluster headache to come while I'm at work and then abort it with O2. I don't care if O2 would work for me in 3 minutes or less - I can't afford that kind of thing to happen to me while I'm caring for one of my patients, so my whole life revolves around keeping them away while working. I was fortunate enough to be able to do this with Frova or Amerge. When I worked 40 hours a week, I took Frova on the 12 hour days and Amerge on the 8 hour days, as per discussion that I was doing this with my neurologist. I'm very fortunate that worked for me, but it's not a solution... And now I've got different lifestyle issues - I work 2 12 hour days a week, but I'm in school for my nurse practitioner degree. Still can't use O2 while at clinicals for grad school... Can't use alternatives or I could lose my license, and my career is one of the things that has held me here and kept me going through it all! (In addition to some of the absolutely wonderful people here - including Helen, who I went to visit in England in 2006 and who really helped me through some pretty rough times. And BillyJ, who is another one who talked me off the ledge on nights where I'd get sometimes 10 hits, but sometimes couldn't take anything because I'd already used my triptans to go to work.)
So all this, is what led me into looking into the nerve stimulator implant. Going to continue in another post, since I think this will get too long to post in a second...
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