The Demanding Cycle of Trying New Treatments
There is a demanding multi-stage cycle involved in trying new treatments. It is a complex, time-consuming, and depleting process. I've found that there are 7 stages involved in this cycle:
- Excitement and Hope
- Doctor Buy-In
- Logistics & Time Commitment
- Side Effects
- The Importance of Considering Long Term Effects
- How to Achieve Life Balance When the Process is Consuming
- Taking a Break from Trying
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View all responsesStage #1
There's initial excitement and hope when trying a new migraine treatment. Even though we are aware there is no cure for migraine, we still hope that perhaps we will find a magic treatment that will result in relief. We have all read stories about life-changing approaches.
How did CGRPs bring excitement and disappointment?
The recent CGRP drugs initially had a LOT of hype about dramatic impacts for the majority of people who tried them. It was hard not to get one's hopes up. However, those hopes were dashed for many of us, and reality hit when they didn't work as dramatically for us as they did for others.
Will I get my life back?
Regardless of how many times we've tried new treatments, it's a challenge to keep our hopes in check as the stakes are so very high. "Will this migraine treatment give me my life back?"
Stage #2
It's generally a good idea to run new treatment strategies by our doctors. It can sometimes mean having hopes immediately dashed or raised higher. Perhaps the doctor may offer sobering information about how this or that treatment could negatively interact with another medication we are currently taking such that we need to weigh our options carefully before proceeding.
Stage #3
Once we've talked with our migraine doctors, perhaps we learn we'll have to take time to taper off one medication before we can start on the next. Or, maybe this new treatment will require time to establish a baseline in our system before we'll experience the full effect. Therefore a commitment of several months may be involved.
Will the treatment be covered by insurance?
We also learn whether or not, if so, and how much our insurance will help us with this experiment. Sometimes this step stops us in our tracks due to the expense involved. Others of us are so enticed by the potential promises that we're willing to pay out of pocket, and these expenses can be very high.
Stage #4
When we step into the world of a new migraine treatment, we open ourselves up to potential side effects. There is such complexity involved in this phase for many reasons.
Do the benefits outweigh the side effects?
First, if we are taking other medications, it can be tricky to parse apart whether or not the new treatment is the cause of a new side effect or if an interaction between two treatments is the problem. Importantly, we must weigh whether or not side effects are worth whatever benefits the treatment provides.
What questions should we ask ourselves?
Are we experiencing a marked enough decrease in attack intensity to justify the aphasia? Are two fewer migraines a month worth a weight gain of 5 pounds? 10? Is waking up at night several times too many? What about only once? What are we willing to accept in trade for some relief? Will these side effects fade over time, stay the same or worsen? Are we up for staying the course to find out?
There are no easy answers here, and very few treatments have zero side effects.
Stage #5
We must think about and research potential long-term side effects that may appear years down the line. Newer treatments often have no information on long-term side effects. For many of us who live with daily chronic migraine, we may be willing to risk known or unknown long-term effects in order to have some semblance of quality of life now. Still, there may be a limit to the amount of risk we are willing to consider.
Stage #6
The most challenging part of this process can be the fact that it demands so much of our attention. Because there is no cure for migraine, we are instead looking for incremental improvement in our condition: less severe pain and less frequent attacks. We are hoping to create a world where symptoms are less pronounced – and our nausea, vomiting, and light and noise sensitivity don’t constantly ask for our attention.
How can we tell if the new treatment is effective?
In order to fully evaluate the efficacy of a new migraine treatment, we must be tuned in to its impact on our bodies. Is the pain better or worse? And to what gradation? Am I willing to deal with this or that side effect, expense, etc.?
How do we balance how much we focus on migraine?
And THAT’S the irony. This search for solutions - the goal to make migraine LESS of a focus in our lives - and all of this TRYING cause us to focus on migraine on every front. The question then arises, how to achieve a life balance when seeking new solutions to migraine.
Stage #7
And THIS is why we must take a break from time to time. The rollercoaster of hopes being raised and dashed, the physical exposure to side effects, the constant focus on evaluating pain and related symptoms are exhausting and depleting.
When do we choose not to try?
There are times when we must excuse ourselves from trying so that we may enjoy life with the simplicity of ONLY our migraine condition for a while. As we all know, that is plenty demanding on its own. After all, migraine is an exhausting condition, and it drains our energy every time we have an attack. In order to take on the process of trying, we must have some reserves in our tank.
How much energy are you expending?
Next time someone asks, “Have you tried this or that solution…?” recognize how much you extend yourself every time you do so. Give yourself a pat on the back when you have it in you to try and give yourself a hug when you make the choice to rest and refill your precious energy tank instead.
How do you feel about trying new treatments? Does this multi-stage cycle resonate with you? Do you ever feel like you need a break from trying? Please share your experiences in the comment section below so that we may learn from your well-earned wisdom.
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