Gastroenterologist & Headache Specialist
I’m sorry to report that I didn’t learn much from the gastroenterologist (I know many of you were eager to hear something that might help you). He doesn’t think it’s a functional GI problem, but is a neurological problem. He said he’d be willing to do the tests if I wanted them. I went in thinking I’d do them no matter what he said; now don’t think I will. After four years of exploring other avenues, I am inclined to agree with him that the issue is neurological. I asked about using preventive migraine meds that would target the neurotransmitters and hormones that are released at the start of digestion. He shook his head and said he was sorry that he couldn’t help with that. I asked my headache specialist the same day and got more information, but still the same outcome—it is impossible. He said that the body is flooded with neurotransmitters during digestion. It would be impossible to pinpoint which one or ones are problematic. Even if we could, it’s unlikely there are drugs that work on those neurotransmitters.
My headache specialist did confirm that there’s a small set of people who have migraine attacks triggered by eating anything. I told him that it almost seemed reasonable to stop eating for a couple weeks. He told me about another patient whose migraine attacks are triggered by eating—she wound up in inpatient treatment for eating disorders because she was so afraid to eat. He also said that she’d been in the week before me and was doing great. He couldn’t remember what drug she was on, but was going to look into it for me. I’m about to call the office now and will report if I get any information.
My chart notes from the headache specialist say, “I told her that it is important that she obviously continue to eat, and that if we find the right preventive regimen she will be able to eat without triggering an attack.” It summarizes much of the appointment. He also made it clear that he understands that my case requires straying way off the path of typical preventives. We’ve been off that path for a long time, now we’re on the verge of proceeding as if there were no path at all. He prescribed Celebrex and Adderall for preventives (more on that in a minute). And, if those don’t work, we’ll try monoamine oxidase inhibitors. MAOIs used to be used a lot for migraine preventive, but require strict adherence to a restricted diet to avoid a life-threatening reaction. Good thing that my ability to adhere to such a diet is so well-established. That drips with sarcasm, as it should, but I’m game if MAOIs are effective for me.
What those of you with fatigue want to hear about is the Adderall. My headache specialist has several patients who have had a reduction in migraine attack frequency on stimulants. I tried Ritalin a few years ago. It wasn’t an effective preventive for me, but it gave me energy… for a week. Then it did nothing. I’ve been on the Adderall for just over three weeks now. Whether it’s working as a migraine preventive is still up for debate. What it is doing is giving me enough energy that I’m not glued to a horizontal surface all day every day. It’s not giving me crazy amounts of energy, more like returning me to my energy levels on non-migraine days in 2014. I’ve been terrified that it wouldn’t last, so I’ve been cramming in as much activity as possible.
Three weeks in, it feels a little more like the energy is here to stay, but three months is the critical point for me. I’ve had some drug side effects last that long, then disappear. I don’t think my energy is a drug side effect, but I still can’t believe that it will last. I have had slightly less energy in the last week than in the two previous weeks, but I’m holding out hope that’s diet-related.
I expect Adderall is probably only providing me with symptomatic relief. I’m OK with that, but am hopeful it will also work as a migraine preventive.
Why I’m Not Writing
For more than a year after I started taking DAO, all I wanted to do was write. I had a million other things I wanted/needed to attend to, but writing was my priority. Now it’s like pulling teeth. It doesn’t feel like I have cognitive dysfunction in day-to-day life, but trying to write tells me otherwise. It’s not enough to interfere with decisions or driving, or even show up in most conversations. But it’s enough that I can’t do my highest levels of mental activity—like reading medical journal articles and writing.
I’m using my physical energy to do the other thing I’ve daydreamed about: work on my house. I’m in the middle of painting the kitchen cabinets and have enlisted Hart’s help in moving furniture. I’m planning which cork flooring I want to replace the bedroom carpet with and choosing color schemes. I’m thinking about which plants will fill our yards. I don’t know how much we’ll be able to do right now (either ourselves or hiring someone), but at least there will be a plan in place that I can execute even if I’m laid up.
I still have a migraine attack every time I eat, but I only have to take Amerge to stop it (not Midrin, too). The migraine doesn’t knock me out within five minutes of eating; sometimes I can wait an hour after eating before taking the triptan. And the triptan keeps me from feeling anything more than minor migraine symptoms before it does the trick. It seems ridiculous that this feels like progress, but I’ll take what I can get.
I’m still on the same diet—eating anything else results in a migraine that drugs don’t eliminate. Those migraine attacks aren’t too bad, but do sap my energy for the next day or two (even with the Adderall). Since I don’t believe the Adderall will last, I’m not willing to waste a single day. I’m also still eating only once a day. That’s so I only have one migraine a day and can keep an Amerge in reserve in case another trigger, like odors, set another attack in motion. Tolerex (the feeding tube formula) became a trigger this spring; I’m planning to try it again in the hope that a two-week reset will help reduce my food sensitivity.
The Adderall or Celebrex could be responsible for my reduced sensitivity, but stopping the probiotic might be, as well. I have no doubt that my GI symptoms were caused by the probiotic and there’s a good chance my renewed sensitivity to all food was, too. I stopped taking it in late August and my GI symptoms have been slowly resolving since then (they are almost completely gone). It would make sense that I have a gradual reduction in migraine frequency as well. It took three months of a ridiculously high dose of probiotics for the GI symptoms to start and six for the food sensitivity to return in full force. So I tell myself it took six months to get into this mess, it will take at least as long to get out of it.
I’m Not Gone for Good
I’m not sure how much posting I’ll be doing for a while, but will be back soon(ish). I hope to at least respond to comments in the next few weeks. I miss interacting with you all and I miss writing. I am, however, pretty happy with how my kitchen cabinets are coming along.
(I don’t have the brainpower to edit this post. I appreciate you muddling through the typos and hope it makes sense.)