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My Responsibility

My Responsibility

Today I was interviewed by a lovely woman, exactly my age it turns out, for Prevention Magazine. She wanted to know about my experiences with the CGRP trials for a story that is going to run in the March issue. While talking with her, I would launch off on some tangent or another, about my hysterectomy, or I’d slip and say the drug company name from the second clinical trial which I don’t know yet if I’m allowed to do, or mention my controversial pain management plan (yes, I use opioids). “Wait!” I’d say. “Off the record.” I wanted to make sure I tempered my comments to continue to provide hope in these new meds, but also not too much hope. As I emphasized to my interviewer a number of times, there is no cure for migraine disease, but the CGRP drugs may help us to maintain and reduce our symptoms better than anything we’ve ever known.

My unrelated heiplegic migraine

When I wrote my second post-CGRP article for Migraine.com, it freaked people out on Facebook, and for good reason, because I basically stated that after the second trial drug had been discontinued I was hospitalized and then had my first hemiplegic migraine. Hemiplegic migraines are rare and scary. I absolutely do not think that this extreme, bizarre thing that happened to me would happen to anyone else discontinued from any of the CGRP drugs, and this one is the last of them in the pipeline; it could go through a lot of changes. I also had only a five month break between the Amgen trial (erenumab) and the second one, and the two drugs’ mechanisms are completely different, which perhaps leant itself to some weird effects, but of course I don’t know. I was asked to jump into the Facebook comment thread and reassure, which I was happy to do, and I knew I should add something reassuring to the story itself. Which I did. And changed the title so that the hemiplegic migraine did not seem so directly related to the CGRP. And honestly, it probably wasn’t.

Realizing my responsibility

I have only been writing for Migraine.com for just over a year, and I’m not quite used to having the wide national audience that comes with it. Writing for so many gives me a responsibility. Having participated in the two CGRP trials gives me a responsibility. Kerrie Smyres, whom I’d corresponded with some about a preventative I wanted to try and whose blog I’d been fangirling over for years, interviewed me for Migraine.com because I had been posting on Facebook and blogging about the clinical trials and she knew how curious everyone was about the new drugs, the first preventatives to be developed specifically for migraine. In our extensive email correspondence I first learned of this responsibility when Kerrie asked me to re-word something I’d said in a less-than-clear way. “We don’t want to take away people’s hope,” she said of the implication coming from my careless statement, which was a revelation to me. My own blog on WordPress has something like 300 followers. I’d never had to worry before about the migraine community at large. Thanks to Kerrie’s wonderful article about me, I am now a patient advocate myself on Migraine.com, and I’m still getting used to my words being read by, and affecting, so many people.

Knowing that migraine differs person to person

My own migraine disease is so much different from everyone else’s. We are all so different, especially those of us who are chronic and have been suffering our entire lives. I’m 44. I’ve had migraine for 40 years. There are a lot of aspects of my disease that after years of experimentation I know need a different style of treatment than I would ever recommend to an average person with migraine unless I knew for sure that they had tried everything that I have tried. For example, opioids are not recommended for migraine treatment. Hysterectomies are not recommended to treat menstrual migraine. However, both of them have helped me to improve in my own situation.

Hopeful for the future of migraine treatment

It’s been so long since any of us have had any hope, and there IS hope, both for me and my weird, inherited lifelong disease and also new younger friends who were diagnosed recently but are already chronic. There is hope for people who get one migraine a month or twenty. I fully believe that these medicines will change the entire frontier of migraine treatment.

Sharing my experience with a CGRP clinical trial

So when I say that after the second trial I had a horrible month, remember that it’s only me, in my weird situation, and that it is extremely unlikely anyone else would have the same reaction (and in fact my study coordinator said no one has). Remember too about my good month, in February, when I essentially had no severe migraine attacks during those four weeks after one of my treatments. In the second trial, every month was a different dose, and sometimes a placebo, because they were tracking how whether a “loading dose” once per month or several months of lower doses worked better. In my first clinical trial, I never got to try a higher dose of the erenumab, so I would have to assume that would have worked better than the 20% improvement I had. I also think we don’t have to worry so much about the cost as some of us are, because if insurance companies won’t cover these medicines no one will have access except for the very wealthy, and then the drug companies wouldn’t make the money they are counting on.

I promise to continue to keep all of you in mind as I discuss my experiences, with CGRP and otherwise. We only have a little while to wait now; maybe only about a year for erenumab. For me that is a tiny percentage of the time I’ve suffered and for most of you as well. Hang on, friends. Hang on.

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

Comments

  • ccf23
    2 years ago

    I appreciate your sense of responsibility as it relates to keeping our hope alive. As a chronic migraine sufferer a big part of my life now is keeping some kind of hope going at all times. It is hugely important. But it is my responsibility to make it happen. I find it in all kinds of places, and often in the experiences of others. Not necessarily the successes, but also the vulnerability, willingness to share the tough times, and the honesty. Above all I want honesty from my providers and fellow migraine sufferers. I’ll take responsibility for how I handle it. You are such a candid, fearless writer, and I hope you stay that way Elizabeth. My hope today is found in the sunshine that I am going to take in for a bit & hopefully that will help with my mood & insomnia. And who knows, maybe help prevent a migraine.

  • Elizabeth Roberts-Zibbel moderator author
    2 years ago

    ccf23, thank you so much for this wonderful comment. I sometimes feel like my style sticks out a little too much here, so your compliment means so much to me. I hope you enjoy that sunshine! Take care and thanks for being here.
    ~elizabeth

  • pigen51
    2 years ago

    I read your lead in and saw that you mentioned that you used opioids for migraine control. How Dare You! I say this completely in jest, because after over 40 years of my migraine life, chasing more different treatments than Liz Taylor chased husbands, I still have the only relief coming from some kind of opioid, usually Norco. I at one time had a Doctor who ran a clinic and would give me a shot of demerol and zofran, and I mean a very big shot of demerol, and I would go home, sleep, and wake up feeling groggy, but headache free,and able to function and hold down a job. Of course, the DEA shut him down, and so now after chasing pain clinics, headache clinics, all the neurologists that would see me, and the Michigan state university medical center, I have still gotten to the same place. I am now on disability, I suffer with near daily migraines, which no one can understand, I get a limited amount of norco per month, which I try to use sparingly, but that is hard, when you suffer as much as I do, and towards the end of the month my wife says, ” well, if you didn’t use them all up, you would still have some for this one you have now”. She is a good wife, but nobody who doesn’t suffer from migraine disease can ever understand how the disease affects you. It is not like I get 150 pills per month, like some people I knows. I get 30 pills a month now. And it can often take up to 5 pills to get rid of a single migraine. When you get one more than twice or three times a week, you can see how I have to try to ration and choose when to wait and when to treat. Sorry for being so much of a downer today, but I am in the middle of a 3 day migraine, which is normal for the weather in michigan this time of year. But as many of you know, not only is it the pain, but also the horrible depression that can come sometimes when you have a bad one and others are counting on you and you just can’t be there. I have given up on them coming up with a cure. I now am holding out for the ability for them to allow legitimate pain patients to be treated with dignity and the proper medicines to ease their pain.

  • Elizabeth Roberts-Zibbel moderator author
    2 years ago

    Hi pigen51,

    I am so sorry to hear of your suffering, but now and then it is nice to know there ARE others with migraine disease who benefit from opioid therapy. I have been on a very similar path, also in the Midwest, and I too can no longer work outside the home. Once I found a pain management doctor and got involved in the CGRP trials, my quality of life definitely improved. Maybe when erenumab is released you will find it helps you, as well? Those 30 Norco may stretch a lot farther. 🙂 Don’t lose hope, friend. Thank you for being here. ~ elizabeth

  • pigen51
    2 years ago

    Thank you Elizabeth. I was on a drug trial before. It was for a drug called Vioxx. That is one that eventually, they took it off the market due to it causing heart problems, but they were trying to see if it, in combination with other drugs, like Reglan and something else, could be effective at treating migraine. I was one on the placebo group. But I did feel like I was at the least doing some good for the migraine community, to try and help us by being involved with this study. I have heard in several other places of the CGRP trials, so I am also hoping and waiting. Thanks also for your work in this site. It is a big help for many of us, I am certain. Be well.

  • Soteria
    2 years ago

    I am fortunate enough to live in a city where one of the CGRP trials are being conducted. It was a total life changer for me – the incapacitating migraines I had almost daily for 10 years diminished in both intensity and frequency on the CGRP antibody. I got my life back. I can’t wait until this gets on the market and becomes available to those who are were not able to enter a trial. My study doctor said he did not see any side effects in anyone enrolled – and that was my experience too – I was in a different trial (not Amgen) so I’m not sure how the two ‘drugs’ differ, but I would take this again in a heartbeat. It worked for me where nothing else (and I tried everything) did.

  • Elizabeth Roberts-Zibbel moderator author
    2 years ago

    Hi Soteria! I feel so lucky as well and can not wait for erenumab to be approved. I have no idea why I had such a rough fall but I do know that it can’t have had anything to do with either trial. I wish I still had access to the medication, since there’s no doubt i’m doing worse without it, but we don’t have too long to wait now! Thank you for being here and for your comment. ~elizabeth

  • Ellifane
    2 years ago

    I think this is what my neurologist discussed with me at my last appointment. It was the cost that I was concerned about but you have a good point. I’m hoping this would be a good route for me to take and my neurologist seems to think so too.

  • Elizabeth Roberts-Zibbel moderator author
    2 years ago

    Hi Ellifane! Yes, I am hoping all our insurance companies will cover the erenumab when it is released. I hope you’re able to get it and that it makes a huge difference for you! Thanks for being here and take care. ~ elizabeth

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