Yeah, so this past week was my third week of the I-Match Program. I graduated and went home on Friday. I feel a lot more confident that I can manage the Headache from now on. The whole purpose of the program was not to cure it — they’ve given up on that idea and so have I — but to find a way to live.
We had two “Feedback Meetings” where everyone in the staff — the exercise trainers, nurses, doctors, psychologists etc — would get together with all of the patients at once. In front of everyone the staff would ask us how they thought we were doing, then tell us what they thought we were doing. This was not done privately, but in front of the other patients in the program, for transparency. At both meetings, everyone thought I was doing really well. Particularly impressive, to me and to them, were the biofeedback sessions. They hook you up to this machine that measures the temperature in your finger and you’re supposed to try to raise it just by thinking. The idea is to re-direct blood flow away from your head, which tends to reduce the pain.
In the first biofeedback session, the therapist told me to imagine a beach, and described me walking in the sand and sun and stuff. The second time you have to do it without guidance. Well, the first session I raised my temperature by twelve degrees. The second time, I was even more successful: I imagined myself in a hot shower, and raised my temperature by fifteen degrees. Perhaps this was because, while I shower almost every day, I haven’t been to a beach in years. Twelve degrees is apparently pretty high, never mind fifteen. The more so since I’m a very concrete thinker and was skeptical that I’d get this to work at all.
At the second feedback meeting, however, all of us got a nasty surprise. One of the other patients, Christopher (not his real name), got voted off the island! He was in the week before me and had been in the program a week and a half before that. When it was his turn to get feedback, Dr. Kraus, who normally speaks first, asked the staff at the other end of the line to start. Emily (not her real name), who was in my week, looked at me uneasily, because we both knew this was not normal.
And then the staff really criticized Christopher, which is also very unusual, because they’re normally very positive in their feedback. Christopher, the staff members said, was obsessed with pain relief, which the program could not provide and had told him straight-up they could not provide. He wouldn’t really talk during all the group meetings and was resistant to both patients’ and staff members’ suggestions. For example, during the exercise sessions, if the trainer tried to correct something he was doing, he would just like glare at her and keep doing whatever he wanted. He just had a bad attitude generally. So when Dr. Kraus finally spoke, he summed up the position of the staff and said this was something they didn’t do very often, but they had voted and unanimously decided to kick Christopher out of the program. It was pointless, even unethical, to keep him and waste his time and money when clearly he wouldn’t benefit.
This was all extremely awkward to listen to, but they did it in front of us for a reason: so we’d know exactly why Christopher had to go, and not decide he was being picked on or something. And in fact all of us understood. We’d observed the same things the staff had. Christopher never talked. I had taken an interest in him because he was much closer to my age than the other patients (he is 21) and also kind of cute. I was able to extract the information that he was a student at the University of Iowa, studying history like I did when I was in school, and I thought we could bond over our shared interest in history, but conversing with him was like pulling weeds. One of the group assignments was to write three nice traits each other person had, and none of us could think of anything to write for Christopher, simply because we didn’t know any of his traits at all. I’m sure he had some, but he wouldn’t share them with us.
I think I said before, there’s supposed to be three in each week. But one of the women in my week had to quit on the second day: during the drug infusions she suddenly forgot who, when and where she was, and had to be hospitalized for like a week. She didn’t come back. So that left Emily and me. And then in the week before us, someone had to cancel at the last minute so there was just Christopher and a woman from Oklahoma, Mary. (Not her real name.) Mary and Emily and I got on splendidly and really bonded and stuff and exchanged email addresses, but frankly I’m not sure we will keep in touch. I liked them both a lot but we really don’t have anything in common besides headaches. Emily is a middle-aged stay-at-home mother of two from Columbus. Mary is a late-middle-aged grandmother and self-described “Tea Party Republican evangelical.”
I’ve discovered that exercise will eliminate the headache pain entirely for awhile, plus it’s good for you generally, so I plan to start a regular exercise program. We had to exercise every day at I-Match. I liked being on the NuStep machine in the gym. Once when I got pulled off the machine prematurely cause of scheduling concerns, I was actually disappointed. And this from a person who had never voluntarily exercised before in her life! So I’ve looked into joining a gym. There’s a 24-hour one here in Fort Wayne and I got a free two-week pass off the internet; I will investigate tomorrow. I hope it has a NuStep because I could never afford to buy one of those things.
I-Match also gave me the name of a physical therapist they think I should see, to work on the problems I’ve got with my neck. During the program, twice a week I saw a PT named Ian who was very nice and prescribed a bunch of exercises for me. They take just a few minutes a day to do and my neck’s improved a lot already.
A lot of you have asked about diet. Well, we did have a diet talk and Nurse Debbie gave us a very, very long list of foods that could trigger headaches. Then she more or less told us to disregard the list and eat whatever we wanted. She said (A) If we avoided all those foods entirely there’d be almost nothing left to eat and (B) All of us had had headaches for so long that if there was a particular food that triggered it, we would have found this out for ourselves by now. Speaking of diet, the food in the cafeteria was terrible. No high fructose corn syrup to be found anywhere! Low fat this, diet that, low sodium something else.
For medicine, as I said before, DHE works for me, but they said to take it only twice a week. They strongly advised against taking painkillers, ever again, for anything, and gave us a list of pretty much every painkiller known to man and told us those could trigger the horrible “rebound affect” with our headaches. (This is why they don’t want me to take DHE too often, cause using it too much could also cause rebound headaches and render the medication ineffective forever after.) I finally did learn to inject the stuff without a hitch, but I can’t take it too often in any case because it costs $35 a dose. As for other meds, when I need them for anything else — color me skeptical. I am sure rebound headaches exist, but I’m not going to never take painkillers again just out of fear of triggering them. In fact, I’ve already cheated: I hurt my foot pretty bad while in the program and took Advil for a day or so. Four in all, I think. My headache level didn’t change one whit, and I told Nurse Jane about it, and she said that I should just not use painkillers several days in a row. If I have to get a tooth pulled or something and have to deal with pain after, I should tell the dentist or whoever to call the Cleveland Clinic for advice about what drugs to prescribe. Yeah, okay.
But no more Dilaudid. I had been taking that for my headaches and, frankly, it wasn’t working so well anymore. The maximum FDA-recommended dose, 8 mg, which is like horse tranquilizer for most people, wasn’t doing anything for me. And apparently Dilaudid is a particularly bad rebound-causing medication. Before my first weekend home, one of the neurologists asked what she could prescribe in case I had a crisis headache at home, and I said, “I usually take Dilaudid.” And she said, “I will prescribe Dilaudid over my dead body.” Don’t be shy, Dr. Tepper, tell me what you really think!
The other neurologist I saw was Dr. Stillman. He is Jewish and the whole older generation of his family are Yiddish speakers — which interested me a lot, given my interest in Judaism in general and Yiddish in particular. Dr. Stillman thought I was a riot. Just about everything I said made him burst out laughing. I wondered if he was going to asphyxiate himself or something, seriously. I will see him at my follow up appointment in June — also Dr. Kraus and Ian the physical therapist.
So DHE. And stop swallowing opiates by the fistful. (Followers of this saga know I was pretty sick of doing that, anyway.) And exercise. And physical therapy. And going BACK TO SCHOOL to finish that degree so I can get a real job that I don’t hate.
One last thing: The first rule of Fight Club is: You do not talk about Fight Club. The second rule of Fight Club is: You do not talk about Fight Club. In that vein, on the first day we were told that thenceforth are not supposed to complain, or in any way show it, when we are in pain, and our loved ones are not supposed to ask. That includes all of you. It’s for my own good. 🙂
Yeah, life looks pretty good from here.