I’ve been away far longer than I expected. Since I know you worry, I wanted to let you know that I seem to be improving v-e-r-y s-l-o-w-l-y. Eating is back to triggering migraine attacks (this is not a failure of DAO; another treatment I tried went haywire). Tolerex (the feeding tube formula) seemed like the perfect short-term solution… then it started triggering attacks, too.
Since the max dose of naratriptan (Amerge) is two tablets a day, for the last week, I’ve been eating two meals each day and take a naratriptan and two Midrin after each one. (Please don’t double up on a triptan and Midrin without talking to your doctor first—it could increase stroke risk. My doctor said it was OK for me, but his nurse freaked out when I told her about it on the phone.) This is not a solution, it’s only a bandaid. One I’m grateful to have, but a temporary fix nonetheless. My doctor and I have determined that I am not prone to medication overuse headache, so that’s not a concern, but these drugs are too harsh to take twice a day indefinitely. More significantly, it helps with the eating-triggered attacks, but leaves me without effective treatment if any other triggers come along.
The other problem with the current regimen is that it doesn’t help like it used to. Three months ago, a naratriptan and two Midrin would stop migraines within a couple hours even when I’d eaten way off the diet. Now, the drugs leave me in a low-level migraine almost all the time even when I eat foods that were once fine. The pain is a little worse than typical, the brain fog is little bit less, and the fatigue is considerably less. It’s like it has averaged the highs and lows that have been typical for me in the last year, so that now I’m in a constant state of mild-ish migraine. Turns out I prefer the highs and lows.
Today I am hopeful that I’ve found something else that will help. I’ve been taking probiotics since August. When I stopped them for a week in Septemeber, foods that had been OK became triggers. Going back on them let me eat those foods again, but hasn’t allowed me to reintroduce any more foods, even at higher doses. The probiotic I’m taking now, VSL #3, has one less strain than the one I originally took. I tried adding that strain individually a while ago, but it triggered migraine attacks. Four days ago, I opened up the capsule and only took a sixth of it. No migraine ensued and I’m now up to taking a third of the capsule each day. My reactivity to foods seems to be lessening. Maybe this is the probiotic, maybe it’s just time. The improvement could be a fluke or short-term, but it feels like more progress than I’ve had in the last few months.
This has been frustrating and scary. And I don’t even get to eat whatever I want—foods that were moderate triggers before are now major triggers that require more triptans and Midrin than I can take in a day. I’ve been catastrophizing some, but can mostly keep it at bay by reminding myself that I have no idea what the future will bring and that the past cannot predict it. Still, thoughts that I might never feel as good as I did six months ago aren’t far from the surface.
Thank you for your kind comments and emails. It helps a lot to know I’m in your thoughts. I’m thinking of you, too, and am sorry I’m unable to respond to comments right now. You’ll hear from me as soon as I’m able. Today I’m cautiously optimistic that it won’t be another month between posts.
(For an unrelated feel-good moment, take a look at these beautiful illustrations of love. They’re not flashy, romance novel-worthy moments, but the quiet, consistent moments of love. They brought me to (happy) tears.)