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An Update

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.)

10 Responses to An Update

  1. bibi says:

    Hi Kerrie, I have had good results with the low histamine/no gluten diet as well. From other people on the net I have learned, that the DAO alone will not do the trick. In fact I use it very rarely now and stay away from fastfood, which has helped me a lot. I am not the fanatic herbmother type of thing, so it has taken me some time to accept, that I will have to stick with this diet if I want to avoid migraine hell.
    I hope you are not crashing into rebound headache problems with your current medicine regimen.
    Some suggestions that might help:
    Peppermint oil on the temples and neck: Sounds absolutely quacky, but it helps me a lot, when a migraine attack is on the way. It takes away a ‘crampy’ kind of feeling in my head.
    Traditional Chinese medicine: An acupuncturist gave me some herb pills against the pain. They worked wonders in taking the last pain after an attack and cleared up the brain fog fast. Acupuncture wasn’t of any help at all to me…
    I hope you will be soon up and running again and able to enjoy the great spring weather :-)))

    • Bibi, I’m glad you’ve found some relief. I still have to use the DAO to eat anything, though I follow a low-histamine, gluten-free diet. Thanks for the suggestions.

      Take care,
      Kerrie

  2. Katie Burke says:

    Thinking of you! Thanks for the update.

  3. MZ says:

    Hi Kerrie, I’ve been reading your blog for years and am sorry you are going through another difficult period. My migraines are now occurring almost every single day and I have found over the years that the triggers are cumulative and the pattern and responsiveness of my migraines is ever-changing. i have no doubt that therapies that worked previously lose their efficacy and that new ones are suddenly helping. I have discovered that my body is as much mystery to my doctors as it is to me but that chemically, in terms of responsiveness to diet, medications etc. it is NOT a science. I really hope you feel better soon.

    • MZ, thanks for the support. I’m sorry that you’re in a cycle of nearly daily migraine attacks. It’s not a fun place to be. You’re totally right it’s not a science. I’m constantly tweaking things.

      Take care,
      Kerrie

  4. Kerrie, I hope you are beginning to feel better. I, too, have found treatments that work, but then gotten totally thrown off by a third party. Sometimes I feel like I don’t want to mess with what I have now for fear of making things worse–even though it would be really nice if they got better!

    • Thanks, Kelly Lynn. It’s reassuring to know I’m not alone. I kind of wish I’d left well enough alone, but the truth is that I was walking a very thin line. I’m actually beginning to wonder if the treatment wasn’t the problem, but just happened to coincide with another issue.

      Take care,
      Kerrie

  5. Liz says:

    Hi, I’ve been treated for medication overuse headache twice in the past few years, and I wondered how you and your doctor determined that you are not prone to this?

    • Hi Liz,

      I’ve taken extensive breaks from medication (one was 18 months) to see if I had MOH. There was no decrease in my migraine frequency or severity—in fact, it increased. When I take the meds daily, as I am now, my migraine frequency and severity do not increase. MOH is a serious problem for some people, but not all of us are susceptible to it. And not all doctors are willing to work in the gray area. Many stick to no more than 10 meds a month no matter what.

      Take care,
      Kerrie

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