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.
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.