The-other-side-of-the-spoon

The Other Side of the Spoon

Last week, the university where my husband is an instructor held a “teach-in” about the opioid crisis. Mainly populated with speakers from mental health agencies and youth social workers, the two-day long program was missing a viewpoint from the other side: that of chronic pain patients who are having a newly difficult time getting their needed medication. John asked me if I would want to speak, with him, as part of the program. I didn’t feel I could say no. Besides, he asked me back in May.

Nerves and a migraine before the presentation

September came very quickly. John prepared a power point presentation crossing out a word of our given title, “The Other Side of the Coin” and replacing it with “Spoon.” Of course that morning I got a medium-grade migraine at work at the library, and was a sweaty, brain-fogged mess by the time my Imitrex kicked in and I got home with only an hour until we had to leave. John assured me he would do most of the talking and refer to me for some things, and if I didn’t feel comfortable I could just pass it back to him. “He’s a lecturer,” I thought, “he tosses off 75 minute presentations like nothing.” He showed me the flyer with our names on it. “Elizabeth Roberts-Zibbel, national advocate and writer for Migraine.com.” Yikes.

Explaining migraine through the spoon theory

The room was bigger than I thought it would be. More chairs. John put a page of our graphic novel “Migraine 365” up on the smart board, and the room started to fill up. We planned to start with an explanation of blogger Christine Miserandino’s spoon theory and actually pass out plastic spoons. Our goal was to make our audience, mostly college students and instructors, understand what it was like to have, and to care for someone with, an illness that never goes away and is frequently painful and always fatiguing.

Discussing migraine treatment options

We discussed other ways to handle chronic pain, like meditation and biofeedback. We discussed new developments like CGRP antagonists, and old developments like the triptans and pitfalls like Excedrin migraine. The audience participated and looked empathetic and interested.

Near the end, I tried to summarize our purpose, which was that we, John and myself as well as most of the chronic pain community, agree with many of the new limitations placed on the use of opioid medications. Someone who has knee surgery doesn’t need 90 oxycontin to either create an addiction problem or sit in her medicine cabinet for her grandkid to find and distribute. But people who are in pain every day do need to be able to continue to use the medications that help them, particularly when used in conjunction with other medications and natural remedies, and with a trustworthy medical team that works together.

Wanting to be able to live

An audience member asked whether I expect to be cured at some point, and I got a little choked up. I told her no, I don’t expect to be cured, as there is no cure for migraine, and I also told her that I no longer expect to get significantly better. I hope that Aimovig will increase my quality of life, but most of us using it still have nearly the same number of “headache days” we always have, at least so far, though that pain might be easier to treat. I told her that my pain specialist had just asked me what my goal of treatment was, and that my answer was the same as it’s always been: I just want to be able to live, and be happy. That’s all that anyone can really ask for.

Comments

View Comments (35)
  • Elizabeth Roberts-Zibbel moderator author
    2 months ago

    Oh my gosh you guys! I’m so sorry, I combined the names of the newly-approved drugs into one. The Teva drug is called “Ajovy” and the Eli Lilly one is called “Emgality.” Ajovy is the one i’d like to switch to. I apologize for any confusion!

  • Bskuhl
    2 months ago

    I’m glad this topic is finally being addressed. As a chronic pain sufferer and lifetime migraine sufferer, opiates are not the demon the media and government want you to think that they are. They are lifesavers to people like me and hospice patients who are dying. Recently the federal government including the DEA have been attacking these drugs that are legitimately used by many. I work in a pharmacy and have had the DEA harass us and I also know doctors that have been harassed as well. Pharmacys and doctors have become afraid to prescribe and dispense these drugs even to hospice patients. I personally know hospice patients that are suffering because they cannot get an adequate treatment of opioids. Personally I think it’s sickening and unnecessary to condem those in pain to a lifetime of torment or an ending of life treatment to be withheld. My wife recently had a pacemaker put in at the hospital. She was in tears from pain from a 2 inch wide gash that was 3 in deep with a 6 inch in diameter hunk of metal placed in her chest. The surgeon came in the room and was not going to give her any treatment for her pain besides Tylenol. It was only because I was there and would not let the doctor out of the room until he treated her with dignity and compassion that she got the pain relief she needed. With respect to migraines, I really think it is interesting that so many times I have heard doctors won’t prescribe opiates because they might give you a rebound headache. For one, a rebound headache isn’t nearly as bad as a migraine. But secondly, if I don’t have an opiate available I will take so many more over the counter medications that I will surely get a rebound headache from overuse of Tylenol and ibuprofen. And lastly the media is derelict in their duties as usual. They tow the government line and tell about drug deaths that are caused by opiates but fail to mention that many many drug deaths are caused by the illegal use of opiates like heroin. They do not disclose the death rate separately from the legal legitimate use. This all fails to reveal the true menaces that are far worse than opiates 1 being meth, the other being alcohol. Alcohol is by far the most damaging societal drug on the market and it’s completely legal in all 50 states. I long for the days before there was a DEA and a War on Drugs where most of the death and misery comes from those enforcing that war. For some perspective, 70 years ago everything was legal and over the counter but only 45 years ago the DEA did not exist.

  • Elizabeth Roberts-Zibbel moderator author
    2 months ago

    Thank you so much for all of your affirming thoughts! When I saw how many comments were on this article I got very nervous. Opioids are certainly an emotional, hot-button topic.

  • Georgiana
    2 months ago

    I can’t imagine having to be on an opiate / opioid for an abortive. That would be horrible. Of course, I’m one of the apparently rare people who gets minimal to no relief from that class of medication for any kind of pain. That’s one reason the drug-seeking stereotype of migraine sufferers baffles me. Do opiates / opioids actually do anything for migraine for anyone else? If I’m going to the ER for treatment, I wanna be shot up with Phenergan and Immitrex, not Percoset.

  • Bskuhl
    2 months ago

    Hate to put it this way but hell yes! Sometimes after Imitrex has failed is the only thing that can save me from hours or even days of such an intense pain that I can not even make it out of bed.

  • Elizabeth Roberts-Zibbel moderator author
    2 months ago

    Same. They work wonders for me. And my ER does not have Imitrex. I’ve asked OFTEN. At this point I’ll suffer for weeks rather than go to my ER. This was never the case before. Their kindness went right out the window with the dilaudid they used to give me (with zofran and decadron).

  • joyrobbedbypain
    2 months ago

    I have taken one shot of Aimovig (9/26) and as of today I have had 12 migraines. Which is normal, however taking my Relpax at the beginning of a migraine did not work. I also experienced going to bed with a migraine and waking up with a migraine, which hasn’t happened in a long time. I’m wondering if someone else has experienced this after taking their first shot of Aimovig?

  • Elizabeth Roberts-Zibbel moderator author
    2 months ago

    Thanks for this question! I am having a terrible time which is why there haven’t been many articles or comments by me. I’m on my third month of 140 mg of Aimovig and while the migraine doesn’t get super severe, it seems to last forever. That corresponds with you waking up still having one. I’ve had about 3 weeks of almost constant level 2-6 pain. I think I’m going to try to switch to Emjoy. I did better with that one in the clinical trials.

  • Deb
    2 months ago

    Good for you for being able to address a room full of people, who may or may not understand, the daily struggle of migraines! I think I would have shriveled up, but it sounds like your husband is an active support for you, and that’s all it takes is one person to “get it”! Keep fighting the fight, I’m right there with you!
    Deb

  • Elizabeth Roberts-Zibbel moderator author
    2 months ago

    Thank you so much Deb! I appreciate this! 🙂

  • Nikita212
    2 months ago

    I so relate to pre-speaking migraines! As a writer and health coach, I’ve had many speaking engagements, but the initial nervousness they brought on never went away.

    The migraines I get 3 to 4 times a week have made it next to impossible to speak publicly with any reliability, so I have pretty much stopped doing them.

    I think the pre-speaking stress combined with the higher frequency of attacks have made me back away from this sort of expression. Writing can be picked up and put down as needed.

    I agree with you on the increasing unavailability of pain medication. I’m not speaking iPods, but most neurologists have wanted to use triptans or nothing. I can’t take them, which leaves me with little to work with. They seem more interested in giving marginally helpful injections than treating the actual attack. As a migrainure, I feel we need a holistic approach.

  • Elizabeth Roberts-Zibbel moderator author
    2 months ago

    I have come to the belief that migraine is different for every single person, and that is why it is so hard to treat. I’m sorry you’re one of those who can’t take triptans. I’ve always been grateful that I can, but I’m positive that using them like crazy in the 90s is part of why I went chronic. I was never told to limit my use. And yes, I think “triptans or nothing” is pretty common, unfortunately. For me, a combination of holistic and standard medical treatment seem to keep me relatively functional. But I still have bad bad flare ups and feel disappointed that I’m having one right now, in my third month of Aimovig treatment.

  • peacemom
    2 months ago

    Most people don’t get our community. I find myself pushing through more of my pain, agony and getting more depressed until I finally isolate myself. Everything remains the same.

  • Elizabeth Roberts-Zibbel moderator author
    2 months ago

    I am having a bad flareup right now so I fully empathize. I want to be in bed all the time. Yesterday I finally decided to stop expecting to get better soon – to not wait for the weather front to pass, or a stressful event to be over. I’m going to have to push through. Take care of yourself peacemom.

  • petmigraine
    2 months ago

    Thank you for sharing this with us and with those at the above-mentioned program 🙂 Very brave of you to step up and represent those who suffer~ I’m curious if you let the audience know you dealt with a migraine that very day ?

  • Nikita212
    2 months ago

    So was I.

  • Elizabeth Roberts-Zibbel moderator author
    2 months ago

    Yes! I did. I told them while I was explaining the spoon theory that I was experiencing brain fog due to having had a bad migraine – that I was in the last stage of it.

  • bbergs2802
    2 months ago

    Interesting article, especially the info about the Aimovig. I have used it for 2 months (and still trying to get the 3rd month), but so far no change in my migraine pattern – basically the same number of migraine days each month and I still have to take Zomig or Relpax. I am highly allergic to opioid medications so that isn’t an issue for me – but for people who live with chronic pain, the use of opioids is often a necessity!! Sad that because others have abused it, people who truly need it, and who have taken it as prescribed are now being punished – and cannot get the medication they need!

  • Elizabeth Roberts-Zibbel moderator author
    2 months ago

    Thank you bbergs. As you may have read in the other comments, I am not having any luck with Aimovig. I hope to switch, but am looking at another couple months of living as I am now which isn’t making me very happy. I hope that you notice improvement soon or are able to switch as well! Take care.

  • KarenE
    2 months ago

    I was wondering if you use anything other than Imitrex for relief. Imitrex, Treximet, and all the other triptans make me feel worse than the migraines do. Several years ago I tried an opioid (Fentanyl), and had a horrible experience with it.

    I tried Aimovig for two months and didn’t see any results. I read an article that stated chronic migraineurs can expect to see migraines reduced by 2 per month while using Aimovig. I’ll give the other 2 new migraine injections a try, but I’m not very optimistic, and I’m not going to inject something that is not going to relieve more than 2 migraines each month.

    I’m 60 years old and have been disabled for 11 years. I’ve tried every medication available, as well as Botox, acupuncture, biofeedback, and massage therapy. Nothing has worked. I’m a slave to the migraines, and it doesn’t look like anything is going to change that in the near future.

  • Nikita212
    2 months ago

    I’m in the same boat. I know the frustration you feel. I tried running my own business for 10 years, thinking the more flexible hours would work. Instead, I ran out of savings and couldn’t keep up with the demands of being a solo-entrepreneur. Now, at almost 62, I’m waiting for social security to kick in.

  • kateymac
    2 months ago

    KarenE – just one thing:
    I always got too sick from triptans to use them until I started taking a pain med with it. I take either Tylenol, a Vicodin, or some Advil and they seem to take care of those awful side effects. Especially the Vicodin works for me. I don’t recall where I got the idea, but my headache specialist at the time said it was fine.

  • Elizabeth Roberts-Zibbel moderator author
    2 months ago

    I am curious about what my neurologist will say about my experience with Aimovig when I see her next month. When I was in the clinical trial, it seemed to cause a very slight improvement right away. But I’m hearing some people say it might take 6 months to be effective and I don’t know about that. I actually feel like I am doing *worse* than before I started the Aimovig. Certainly no better. I had much more success with Emjoy in the clinical trials – I was getting different amounts every time and I don’t know what dose caused this result, but in February 2017 I had NO MIGRAINE attacks whatsoever. Kateymac, I’m glad someone else has had a good experience with those meds together. I can’t take hydrocodone (it makes me feel yuck) but oxycodone is the one that works well for me, and works well in combination with imitrex. All of you, I hate to hear the suffering you’re going through. I’m with you.

  • wappaw
    2 months ago

    Nice article, and to the point. No cure. Difficult to get the pain relief you need. Imitrex is limited to 9 a month from the insurance company. Botox is once every 3 months. Chronic migraines, which I have, are identified as 21 or more a month. Somehow pain control doesn’t add up. I am starting Aimovig next month, but as the article noted, it may just reduce frequency by two.

  • Georgiana
    2 months ago

    As soon as Glenmark sumatriptan became impossible for me to get, I had to switch off of it. Seriously. Other manufacturers don’t work, and I can’t pay for name brand Immitrex. It’s been a huge blow to me. I’ve had to rely on injections instead. Needle pens, NOT the medieval torture device known as Sumavel. I was getting pills and pens at the same time. You might look into that. Good luck.

  • Elizabeth Roberts-Zibbel moderator author
    2 months ago

    Also, I have noticed that, as you said, some manufacturers of generic medicine seem to work less well than others. I do not like Dr. Reddy’s imitrex tablets at all. I also can’t afford to request name brands.

  • Elizabeth Roberts-Zibbel moderator author
    2 months ago

    Georgiana, I have both injections and tablets as well. Sumavel was AWFUL!

  • shell-bell
    2 months ago

    I have frequent migraines but not quite enough to constitute being chronic. Given that we are limited to only 9 Imitrex per month, and I would often need more than that, my neurologist prescribed me nine 100mg pills and told me to split them in half so I’ll have 18 doses instead, effectively working around the insurance problem. I take a 50mg half-dose, along with a 550mg Rx naproxen sodium as soon as I feel a migraine coming on and if I don’t feel better in a couple of hours I’ll take the other half of the Imitrex. That, along with taking these meds at the absolute first notice of a migraine coming on, seems to work well for me. When possible, I don’t allow a migraine to take hold before I medicate. It’s not a perfect system but it’s saved me a lot of pain through the years.

  • Elizabeth Roberts-Zibbel moderator author
    1 week ago

    shell-bell, i do that also with my imitrex! (break them in half).

  • MrsMiMoo
    2 months ago

    Please tell us how AIMOVIG works for you. the UK health system won’t let many of us have it as the UK system is a rationing system.

  • Cappucinno
    2 months ago

    I have now taken 2 – 70 mg. doses of Aimovig, the 1st on 9/11 and the 2nd, 28 days later on 10/9. I was not expecting any great results due to my track record of about 40+ years (but I was hopeful). The 1st dose didn’t do anything for me but I didn’t want to give up. I also kept in mind what the pharmacist at the medication line told me, which was that according to the trial periods, it sometimes takes longer for some people to have the medication work through their system. As I said, I took my 2nd dose of Aimovig on 10/9, and here it is 10/17 and MIRACULOUSLY I have not had to take my Imitrex for 9 days now. All I can say is that I can’t believe it, I hope it lasts and I pray that everyone who suffers the way I have can feel the tentative elation I now feel. Here’s to all sufferers getting help.

  • Elizabeth Roberts-Zibbel moderator author
    2 months ago

    YAYYY!! I’m so happy for you!

    As for me, it is not working. I’m on 140 mg and I am in my third month of treatment. The first month I noticed a different, the second month I did not, and the third month seems even worse. That doesn’t mean, however, that it won’t work for anyone. It clearly does, and I want to try Emjoy, which is Teva’s version and was just released here. I had clinical trials with both Aimovig and Emjoy and I did better with Emjoy.

  • skipper
    2 months ago

    Thanks for putting yourself through that to educate on our behalf, and thank you for writing.

  • JPaula
    2 months ago

    Thank you. This article and comments are very helpful. I have almost daily headaches, often being awakened by them – some go away and some don’t. Recently my neurologist gave me Naratriptan and I’m still trying to figure out when to take it – first resort or last resort. Reading the above gave me some ideas.

  • Elizabeth Roberts-Zibbel moderator author
    2 months ago

    JPaula – they say that triptans are best to take as the migraine is coming on, right away, but that is so hard to do when we get so few tablets every month and so many headaches. I’m glad my article helped you! Thank you both for commenting!

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