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CGRP Treatment #3

I have had a week of not being sure what is going on with me. Two days in a row, I developed a moderate migraine in the mid-afternoon and needed to take an Imitrex and lie down. (I take generic Sumatriptan in tablet and injection form; out of habit I still refer to it as Imitrex, the brand name given to it by Glaxo.) Both days I slept hard and woke up with less pain, but very groggy and draggy. I had some insomnia issues over the weekend and worked through those, and starting Monday felt more extremely fatigued than usual.

Since beginning my second CGRP study this summer, I’ve been noticing significant improvement, so this week’s black sliding surprised me enough that I was playing the “what could be doing this” game. You know the one: you think back over everything you’ve eaten, any new products you’ve tried, new places you might have gone. Medication changes? Weather patterns? Maybe just a normal cold or virus? I came to the regrettable conclusion yesterday that I might need to take another break from gluten. I will write about my gluten / migraine experience another time, but a gluten-free diet is my least favorite migraine intervention, since I don’t cook or bake and am an exceedingly lazy eater. So I was facing this change with trepidation.

Today was my third CGRP treatment in the new study (I was involved in a different CGRP study, for Amgen, previously as well). Because of a non-disclosure clause in the consent forms, I can’t say what drug company is involved, but they are looking at which dosing amounts and frequencies work best. I may have gotten a large “loading dose” the first time and small doses the next two, or large doses the next two, or none the next two until another loading dose in month four. Or my first dose may not have been a loading dose at all. What that basically means is that today’s treatment, and the last one, could have been placebo (saline).

John used to drive up to the facility with me, but since he started his new job as an instructor at our local university, he hasn’t been available as much. The drive is just over an hour. I put my music on shuffle and felt pretty okay. At one point during the drive, my mind wandering, I realized that I hadn’t put on a new Estradiol patch and had been without one for three days; since my hysterectomy in 2011 I’ve been on a low dose patch to be changed twice weekly. Eureka! I was both relieved and frustrated, because that had been a stupid mistake to make. Thinking back over my symptoms, I do think they could have been caused by a sudden lack of estrogen.

When I arrived, I was beginning to feel prodrome-y. My fatigue was back, and my eyes felt dry and heavy. Clear squiggles appeared in front of my eyes as I scrolled through my phone in the waiting room. My friend and study nurse, “H,” came out to get me and once in her office I asked her to close the blinds. She took my vitals. My temperature was up, and so was my pulse. I normally run tachycardic but we puzzled over the almost 100 degree fever. I told her my estrogen theory and she agreed that could have caused my recent problems.

The study drug kit was on her desk. I completed a survey about suicidal thoughts, which I have to do every time. “Since your last visit, have you wanted to die, or fall asleep and not wake up?” No. “Since your last visit, have you done anything to hurt yourself?” No. (In fact, I have asked H whether anyone has reported decreased rates of depression in the CGRP studies, because I feel I’ve noticed that. She said no. But isn’t that an interesting question? Which comes first, depression or the migraine?)

H warmed the syringe containing the medicine in her hands. Today there would be one injection in the back of my arm, and unlike the similar injections in the first study, these sting. I could feel the medicine entering my body, and I really feel like saline wouldn’t have that effect in a subcutaneous injection (under the skin, instead of in a vein or deep in the muscle). There was a swollen bump on my arm, which I also don’t think saline would do. Therefore I believe I have been getting the real drug at each treatment.

By that time my pain was at 2, barely noticeable, but my aura was increasing. I felt the drug moving through my body and sort of “lifting” that pain and discomfort. A physician’s assistant came in to do an examination. For some reason, she shined her light directly into each of my eyes for an unbearably long time. Previously I have only had doctors quickly “flick” the light across my pupils, knowing how much it would bother me, but this woman had no such hesitation. The very mild headache returned, settling in my temples. When she left, H said, “Did that bring your headache back? I have no idea why she needed to do that. Next time maybe I’ll say ‘Heart and lungs only, please!’” She smiled.

We chatted a bit, set my next two appointments (one of which is just for lab work), and H checked my pulse again. Because my heart rate and blood pressure can both run high, she often will check them numerous times per visit. This time, my heart rate was an inexplicable 116. The little bit of pain had begun to fade again. “I feel fine,” I said. “Maybe a little drowsy.” She told me that might be my body overcompensating. I closed my eyes and used relaxation and biofeedback to try to get my heart rate lowered. A few minutes later it was down to 104, so we went to complete the urinalysis and blood draw. Afterward she made sure I was feeling fine to drive home, and I walked back out into the humid sunshine.

The migraine stayed away during my drive home. After the treatments, I usually feel tired but in a refreshing way, if that makes sense, similar to how I feel after an Imitrex injection. As soon as I arrived home I opened an estradiol patch and slapped it on my hip. I will put off my gluten reduction plan until I can tell whether my problems this week have been from the sudden lack of estrogen. Now to help John get us enrolled in our new medical insurance plan! (Yikes…)

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • Holly GL
    3 years ago

    Just realized tyramine is a product of the breakdown of tyrosine! So either one 🙂

  • Holly GL
    3 years ago

    Thanks for sharing your experience – I’m happy you’re getting some relief and it’s exciting that there might be another tool available for our migraine toolbox 🙂

    JOJO, do you mean tyramine? I know that’s a huge food trigger that some even have success with limiting: But I have no idea whether it’s in the CGRP injections.

  • Jojiieme
    3 years ago

    :)) Holly, you’ve stumbled on my family nickname!
    I’ve found the whole chemical thing truly fascinating – I’ve just done that course in medicines and discovered that tyrosine is related to MAO (MOA?) which is the cheese/wine thing many people are careful about.
    Lots of us who think in terms of food chemicals are careful about tyramine but don’t realise that the painkillers working on nociceptors work with the ‘purer’ version (stripped down version?), and that’s the tyrosine.
    While we don’t know for sure what’s in the injections, we can guess a bit based on how they’re expected to work… There are only so many ways you can target the pain experience. The key to G neurons, which seem to control many of our symptoms, seems to be tyrosine related. And I think I remember that the key to helping the sensory cortex (which senses in a hairband across the top of your head) is also tyrosine.

  • Elizabeth Roberts-Zibbel moderator author
    3 years ago

    Hello JOJ! I do definitely feel like this second study drug is having a huge impact. The first drug company was Amgen; I’m prevented from saying what the new one is since it’s ongoing, but there is no doubt I’m having fewer migraines. While the CGRP treatments are very promising, they aren’t cures, and I think especially people who are chronic will see reduction rather than cessation, but I’ll take it!

    As far as the tyrosine, I’m not sure. There may be an advocate here with more of a medical or science background who could answer that. Thanks for your comment and I’m glad you’re here! ~elizabeth

  • Jojiieme
    3 years ago

    I’m migrainey as I write, and also sad as we have a small family drama just now, with an ageing relative, so I’m trying not to be emotional or wordy 🙂
    I AM excited about the development of new meds, and I certainly think prevention is the way to go.
    I love coming back to this forum and reading all the news, partly because of all the hope we get and partly because knowing we’re not alone AND that the accounts have medical worth is validating our lived experience. All this worldwide pain has to stand for something, right?? 😉
    There’s a massive difference between neuropathic pain and nociceptor pain, and idiopathic pain (a mix of the other two), so trying to formulate a ‘better’ migraine medication means firstly deciding which type you’re going to target. Symptomology alone won’t help, from what I understand (and my understanding is basic). I am in absolute awe of anyone who can read the electrical output of cells to determine chemical traces, and mineral contents, and blood flows and the thousand and ten other things going on before they determine X is better than Z for you or me.
    Strict adherence to what’s called the Failsafe Diet in the US (we call it Friendly Foods in Australia, I’m on the strictest level limiting salicylates, amines, glutamates and tyramine) has given me the best control of my migraines. My medication has been halved since February, but it’s still all preventives: topiramate, nortriptylene and verapamil which all work through controlling electrical stimulus cell-to-cell (with in muscles or in blood vessels). (The chemistry is magic! Even if it doesn’t work for everyone)
    But weather and stress are defeating me today.
    And a serious fall and hairline fractures around his eye socket have defeated our ageing relative today. (Don’t you love it when a doctor tells you that a person with dementia can’t have a migraine because a skull fracture with or without a fall isnt usually associated with migraines?!? The man was telling me he had one!)

  • DonnaFA moderator
    3 years ago

    Hi JOJ, Thanks for being here and for sharing your frustrations with the community. Please know that you’re not alone and that we’re always here when you need support. We’re sending warm, good wishes for your relative, and your family. Keep us informed, and don’t hesitate to visit if you need to chat. -Warmly, Donna ( team)

  • Jojiieme
    3 years ago

    I’m sorry a promising treatment seems to have developed a ‘bump’ (interesting about the possible estrogen link, though).
    When I read about these injectables last week, I got quite excited – for ten minutes. At last, maybe a new treatment I could finally look forward to! Unfortunately, the little information available seems to indicate that again a key molecule in the active medication chain is the one that also prevents a lot of us from enjoying cheeses, vinegary foods and dressings, marinades, cured meats, fermented or aged foods… even ripe fruits. If, like me, yours is a threshold situation (you can enjoy some, but not much, and from various sources), you could be in a tricky spot.
    I can’t remember if the tyrosine molecule is actually in the med, or is produced in us as we metabolise it.

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