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Migraine, Advocacy, and Accepting Opiate Therapy

As a Migraine and health advocate, I have seen people benefit from how I share my life experiences. This is why I do it. Normally I’m a very private person – people don’t need to know my business. However, when it comes to being an advocate, my life has been almost 100% an open book.

Until recently.

I feel that I have let you down because I’ve left out part of my story.

I didn’t know how to handle it. I didn’t know what to tell you, or how. I was afraid some would consider me two-faced if they knew the truth. I was afraid no one would understand. I dreaded the criticism I wasn’t sure if I deserved or not, but knew I was too weak at the time to handle.

For years, I have helped patients discover and understand medication overuse headache and helped them find doctors who can help them with it. I’ve seen amazing outcomes when patients discover their problem and fix it. I speak from some experience as I went through the unforgettable process myself many years ago. In my case, going off all my medications only made things worse, so it was determined I didn’t have MOH. But I learned important things during that experience, and one of them was about the seriousness of MOH and how to avoid it, as well as the very real danger that I might not be so lucky next time.

This means I’m just like every other Migraine patient: it is important for me to stay off the pain medicines. All of them.

I had an old prescription of opiates I kept as an emergency rescue, and my family knew I was in desperately bad shape if I actually used it. Opiates make me itch uncontrollably, and vomit until I dry-heave, sometimes for hours. They make me sleep all the time, and when I’m awake, I can’t use my brain well enough to understand a conversation or make basic decisions, let alone tell readers about the latest and greatest research. To make matters worse, opiates really didn’t do a very good job of helping me get on top of the pain, and nothing at all to abort the attack itself. However, since I cannot take abortives, I am left with few options but an emergency room that doesn’t understand Migraine. The opiates did little, but they at least did something.

The fact is, I was so afraid of MOH that I stubbornly, and against my doctor’s extremely vocal wishes, went through multiple serious bone surgeries and many months of difficult physical therapy and recuperation associated with them, all without benefit of any pain relief.  None.

First, due to chronic Migraine I’m tougher than my doc understood, and secondly, I was so afraid that, if anything got worse with my head, I feared I wouldn’t be able to handle life anymore. I didn’t want to die, but I also knew that I couldn’t deal with my head and face pain levels getting any worse. I was maxed out.

I argued with my doctor “You think the surgery is bad? It’s nothing compared to my head, so the head will always come first.”

For me, I felt it was a life and death decision, and I treated it as such. The surgeries were quite bad, but nothing compared to the unrelenting pain in my head.

This June, everything changed. When multiple doctors urged me to go onto opiates for a serious back injury, I agreed because the pain was so horrible. I had my 30th anniversary trip coming up, and frankly, I was living for that. So we agreed this would hopefully be a temporary holding pattern until I could get back and try more invasive procedures to get control over the situation.

Then I walked out to my car and sobbed, completely unsure, and very afraid of what my future held for me.

In addition to an increased dosage of my diazepam for severe spasms, was prescribed hydrocodone 5/325 as I wanted the lowest dosage possible. You can always up the dosage by taking multiple tablets, but it’s much harder to go down when they’ve given you a more powerful dosage. I was asked to take at least one 5/325 tablet every 4 hours. I chose to take one before bed, as nighttime was the worst for my back pain, and I hadn’t slept more than an hour or two in several days. Sleep was the priority for me, and I was able to increase my sleep and decrease the number of awakenings as well as the tossing and turning. The rest of the day was spent dealing as best I could with the intense pain. If it got out of control, I took another dose, or even better – ½ a tablet. But only when I was at the point of desperation. The meds affected my cognition throughout the day though, and I knew if my head got worse, I would be in a real fix.

There are a tiny number of Migraine patients who end up on opioid therapy, often as a result of a comorbid condition that is uncontrolled, like mine. Other advocates encouraged me to do what I needed to function, even if that included a weekly patch and constant opioid levels in my system, as my rheumatologist and GP both wanted to see me start. My friends and family told me there was no shame in taking the medicine I needed to make life bearable, and I knew they were right.

Knowing something in my head, and in my heart are two different things though.

I tried other methods of getting hold of my pain which exacerbated my Migraines and had to be discontinued. As a result, I slipped into depression and frustration from the pain I couldn’t even begin to describe.

As if daily Migraine wasn’t enough!

Since my trip, we have been able to take a few aggressive steps forward in treating my spinal and nerve issues. The result is that I have halved my dosage at night, and been able to cut out the diazepam to only a small dosage every couple of days. Every once in a while something happens and I have to up the dose again, or add an additional dosage during the day. I feel like I’m making progress.

There are no magic bullets here. I am in a very complicated, tough situation. However, I know I am not alone. I’m writing today because I want others reading this to know that even a preachy advocate can find themselves dealing with the worst of situations.

I’m just a person – just a patient – struggling just like you.

A big part of me feels better because I feel that having my readers completely understand where I’m coming from is important. I’m a direct and honest person, and trust is dependent upon readers understanding where I am in my journey.

I hope this has helped.

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

  • Jen Cragen
    6 years ago

    Ellen, thank you for sharing your story. I too have daily migraines and have been through the MOH merrygoround. You are strong enough to know to be aware of the risks. By doing what you are doing, you are encouraging people like me. I’ve been tired and drained by the constant migraines. I don’t want to make things worse and so don’t take the medications to avoid the MOH and to make the pills last longer. But that just makes me feel worse. It is a hard cycle of pain and suffering. I’ve been trying to do mindfulness to make things better and more acceptible. I’m too attached to the pain. I miss my life before the meningitis in 2011. Then I only had a migraine on my cycle once or twice a year. I don’t know why it is so hard right now. But thanks for sharing your story and for the other commentors for sharing their stories too. I don’t feel so alone.

  • Newdancerco
    6 years ago

    Thank you! I have been on everything, it seems, and nothing helps. I’m on narcotics now- doesn’t really abort the pain, but I can breathe through the pain instead of holding my breath because the air movement involved is too loud.
    Finding a doctor that gets that breathing can be an audio trigger is a challenge. Then they assume I am seeking drugs. Well, yeah, I’m seeking my medication, and if you have something new to try that prevents my migraines, i’ll happily switch.
    P

  • Beverly Militello
    6 years ago

    Hi Ellen, thanks for sharing your story.Your stories always encourage me and give me strength to keep fighting. I’ve struggled with Chronic Migraines for 14 yrs and am allergic to all Triptans. I’m afraid of having MOH so there are days when my head hurts so bad but I won’t take anything for the pain. It’s difficult to explain to your loved ones why you won’t take the pain medication and suffer when they say that’s why the Dr gave it to you.
    It’s always a hard decision to make when you don’t want to have MOH.
    Thanks Beverly

  • mo
    6 years ago

    Thank you for sharing such a difficult story. You have fought the hard fight, and as mentioned by more than one person, your body does need a break form pain in order to heal. I have chronic migraines, daily, and spent 10 years looking for a preventative medication. I could not find anything that worked, and I tried everything, even things like biofeedback, chiropractic, anger management classes (for meditation practices). Triptans worked as an abortive, but the insurance wouldn’t cover enough doses per month to make it work. Eventually I was put on Vicodin for a rescue, which worked for several years, until it didn’t. Recently I’ve had to move to morphine for relief. I finally found a migraine specialist to work with, who recognized that at this point I probably am in the MOH category, due to past use of pain relievers. Fortunately he didn’t make me feel guilty or responsible, and is helping me to find solutions to work around the condition. I was diagnosed 24 years ago, and spent the years until 2002 looking for medication and non-medication answers. Since then I’ve been on Topomax, various vitamins and minerals, and Vicodin (and now morphine). I still have daily headaches. But I can control the pain, and mostly live with mid-level pain, not excruciating brain pain. I am under-going peripheral nerve decompression surgery (now 4 weeks post-surgery), and am looking forward to good results from that procedure. Then I will work with my Pain Management doctor to slowly decrease, and eventually eliminate, morphine from my list of medications.

  • Chip&Dale
    6 years ago

    I used to avoid opiates and any other prescription Narcs for the simple reason that my family has a long history of drug and alcohol abuse. IMO the tendency to become dependent IS hereditary… as prime example from my families both paternal and maternal. But, that being said I KNOW I am strong enough to fight those demons because I have won my own battle with alcohol in my mid 20’s.
    I too have finally started taking opiates to assist with chronic back pain and migraines. I must share that my migraines, although still frequent have diminished in both frequency and severity.
    There’s no shame in feeling better and using the tools given too us by medical health professionals. It becomes an issue when self medicating or another illegal route is taken.
    I hope you feel well soon and find more permanent relief.

  • Chip&Dale
    6 years ago

    Lol. I found what MOH stands for.

  • Chip&Dale
    6 years ago

    I do not know what MOH stands for but I definitely understand the reoccurring migraine cycle that can occur from using these meds. I’ve actually in the past had to be treated in an ER for a migraine and then the following day had to be treated again because I’ve been over medicated the night before.
    It isn’t pleasant… and totally get where you’re coming from.
    Thank you for the clarification.
    I wish you the best.

  • Ellen Schnakenberg author
    6 years ago

    Sherry – I’m so glad you’ve found a way to be strong enough to fight off the demons that might be chasing you.

    In this case, I really was referring to MOH which is another terrible demon that we have just enough control over to make our lives sometimes seem miserable. It is not addiction or even dependence as we talk about this confusion here: http://migraine.com/blog/the-confusion-about-codeineopioids-and-migraine/

    MOH starts out so innocently with patients treating their pain. It sets in insidiously though, when the medicine that starts out helping us, ends up actually hurting us.

    It is one thing to treat with these drugs if you have no other choice, but something else again to use them instead of utilizing other less harmful choices. MOH is a terrible thing: http://migraine.com/blog/help-how-can-i-not-overuse-migraine-medications/

    ~Ellen

  • Michelle
    6 years ago

    My heart goes out to you. Ellen, you are a courageous woman. You’re caring and informative to us all. I appreciate any and all that you learn and share with us. Thank you for this brief glimpse into your life and all that you do for us.

  • Ellen Schnakenberg author
    6 years ago

    Thank you Michelle for reaching out to comment. <3

    ~Ellen

  • caradrouin
    6 years ago

    I hear you. I’m crying now. I have had an ankle reconstruction and two lumbar fusion surgeries. Because of the long long times it took to convince Dr.s that I had real problems and not just hypochondriac(Migraine stereotype) symptoms, I had MONTHS and YEARS of pain preceding these surgeries. I begin getting MOHs if I take a pain med for a period of time. It could be days or months, but they all do it. Now my list of drugs I can’t take is very long and Dr.s do not take me seriously because of this list, which includes Advil and Aleve.

  • Ellen Schnakenberg author
    6 years ago

    caradrouin – I’m so very sorry you have the need to understand what I’ve been struggling with. But, that’s why I wrote this piece. I want to be sure you know you’re not alone.

    ~Ellen

  • merrie
    6 years ago

    Hi Ellen,
    I just wanted to say first off, thank you, both for your courage and honesty. I also want to say that I agree with others 100 o/o when they say there is no shame in taking opiates when you need to. I definitely understand the worry of MOH headaches, I a terrified of making my situation worse than it is. However, there comes a point where you just have to let your brain and body have a break, otherwise it will never heal. I am in the position right now of having Nothing to take for migraine except anti nauseous meds. It is hell. I don’t know how much more I can take, and if someone gave me an opiate right now and said it would make me feel even one quarter better, I would take it. I am glad that you shared your experience, and hope that you continue to give yourself a break. You don’t deserve to be judged harshly for your action, even by yourself. Any one of us would do the same as you. We are all human and can take only so much. Sending hugs your way
    Mer

  • Ellen Schnakenberg author
    6 years ago

    merrie – as always, you help me feel better about my situation. Thank you so much for understanding, and for taking the time to tell me so. ((Hugs))

    ~Ellen

  • Nancy Harris Bonk moderator
    6 years ago

    Here there!

    Nothing to be afraid of and thank you so much for sharing this with us.

    This type of pain relief may not be forever. If I haven’t shared this with you yet, I was on methadone for 3.5 years and then Oxycontin for 1.5 years. We all have to do what we need to do to stay in the game and these decisions are very personal.

    I’m very proud of you for sharing this with us.

    Nancy

  • Ellen Schnakenberg author
    6 years ago

    Nancy, I only hope I am able to do what you were able to do, and eventually find a way away from anything that could contribute to MOH. The idea that I could eventually cause a situation that is even worse than I deal with now, is overwhelming.

    ~Ellen

  • Shani
    6 years ago

    Thank you Ellen for your courage. It isn’t easy to share but it is empowering for yourself as to others. You never are alone in the struggle as you know. It’s encouraging to have a voice out there esp. when so many of us think “we” are the only ones. Thanks for being strong even when you think your not. That’s when you are at your strongest!

  • Ellen Schnakenberg author
    6 years ago

    Shani, your encouragement is like a warm blanket right now. Thank you so much for taking the time to let me know I too am not alone.

    ~Ellen

  • body
    6 years ago

    Congratulations, Ellen :). You are very brave to share your story. And, there are many people who are going to relate to it and be thankful that you have let them know that they are not alone.

    I believe that for most of us, one of the worst things about migraine is that we want to live a life free of pain and all the other symptoms we get with this disease (as well, many of us have comorbid diseases that complicate our course). Since we don’t have any medications specific for migraine, except triptans, we are put in a position of taking what works at the time to give us relief. (It took me 6 years to get over MOH from Imitrex and I am afraid to take another triptan again because I don’t want to repeat the process.)

    There is no place for judgement when anyone of us shares a story. Rather, we need to extend tremendous gratitude towards that person for having the courage and dedication to help somebody else.

    Sending you lots of thoughts, prayers, and positive energy for healing :).

    Thank you, Ellen

  • Ellen Schnakenberg author
    6 years ago

    Sharron, as usual, there you are – reminding me I’m in the trenches with everyone else. Thank you doll!

    ~Ellen

  • Miryenne
    6 years ago

    There is no shame in admitting that you have to take pain meds for a condition out of your control (just as in migraines). I remember when triptans first came out, and one of the early warnings (that my doc told me NOT to read) was that you could die if you took more than 2 in a certain period. My mom freaked out that I was taking them, especially since I have chronic & cluster migraines, and we both knew I would be taking more. I told her quite frankly, “I don’t have a choice. I can either take them and take the risk, or wish to die anyway. I would rather take the risk and LIVE.” She’s never forgotten that line, and neither have I.

    You do what you have to to get back to any semblance of living, even if that means (due to multiple conditions) risking Peter to pay Paul. As mentioned, I too have multiple conditions (and funnily also have the exact reaction to opiates as you do – they make me SO sick), but some days, you just have to allow yourself to live, and if that means taking the meds, then that’s what you do.

    You don’t do yourself or your body any favors by staying in constant pain (that was -and still is- my hardest lesson to learn btw). You’re body absolutely needs rest/peace to heal. If the only way you can get to the point of rest is to takes meds – then you are actually doing your body a favor and blessing by taking them.

    Funny how the doctors think that is all we want, when we strive SOOO hard to avoid taking them. Keep making progress and good luck on your journey.

  • Ellen Schnakenberg author
    6 years ago

    I wish you weren’t right Miryenne, but of course, you are. Thank you for helping me and all the others reading this remember that we’re all in this together.

    ~Ellen

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