Opinions on Chronic Migraine Treatment Options
I came across an article discussing how many individuals with migraine were unhappy with their treatment plan based on the Migraine in America 2016 national survey. From my own personal experience, I am one of these individuals; so I asked several other people their opinions on the medical care and treatment options available for chronic migraine. Some of these individuals do not have chronic migraine but are affected by it through a spouse or family member. What follows is a collection of their opinions.
From episodic to chronic migrine
Lisa Benson is now episodic but was chronic at one point and is an avid advocate:
In a word or two: treatment sucks! I don't mean to sound harsh, but the way the treatment goes for chronic migraine is not how I thought medicine worked when I was younger. When I started to get daily migraine attacks I had a rude awakening. Though there are medicines called triptans that were designed to take for a migraine attack, you can't use them for every attack or you'll risk the rebound effects. The preventive medicines people can try were not designed for migraine, and since there are so many types, people with migraine have to cycle through trying many different ones before finding one that may actually be helpful. When you're dealing with migraine more than half the time or all the time, the waiting game is awful. And this is all best-case-scenario. Many people that I speak to in the migraine community are still trying to find a doctor who is knowledgeable and willing to treat their disease, try new things, and be inventive. I believe deep knowledge of migraine, creativity, empathy, and steadfastness are all required to treat chronic migraine in the absence of any decent "one size fits all" medicines, and this is truly hard to find for many people. My heart goes out to all people dealing with this, and to think I've talked mainly with people in first-world countries. I can't even imagine dealing with migraine disease in a country unequipped with proper medical care. I hope for better days for everyone.
Caregiver perspectives on chronic migraine
Barbie Gailler has other chronic health conditions and is an assistant caregiver to someone with chronic migraine when the spouse/primary caregiver is unavailable:
The treatment options are ridiculous. In the event that the medications do not make you sick, they cost a small fortune, even with insurance and co-pay assistance cards. Most treatments are experimental so either they are not covered by insurance or are only covered a small portion by the insurance. Unfortunately the medications do not work for every migraine, what works Monday at 2pm might not work Thursday at 1 am.
Steven Workman is a spouse and caregiver to an individual with chronic migraine:
My opinions on the currently available care and treatment options for chronic migraine are dismal. First I'd like clarification. What exactly is a care option? Are we talking neurologists and rheumatologists? My wife has been through about a dozen neuro doctors, at least five of which I have attended with her. They all seem to have one trick up their sleeve. Once they have tried that one thing, they seem to be done.
Most dreaded phrase I think I have ever heard is, “I think you should see a pain management doctor.” I say that because of the three different “pain management” clinics I have personally gone with my wife to, the very first thing each of them has told us is that they do not prescribe pain medication. Seems a bit like an oxymoron to me, but I’m uneducated so perhaps I simply cannot grasp how one can “manage pain” without offering anything that actually helps to manage pain, when she already utilizes alternative therapies. It has become and endless cycle. When a specialist does not want to deal with you anymore they suggest you see a pain management doctor so they can wipe their hands clean of you and your issues.
The biggest problem I see with the available options today is that there have been so many people in times before ours that truly abused the system. These are the actual drug seekers; the people who were strictly drug seeking for the sake of getting their hands on whatever medications they could. This has created an environment today where doctors all claim to be “monitored” any time they prescribe certain medicines. The way I see it, if YOU are the doctor and YOUR patient is in pain, and YOU have a legal medical license to prescribe a variety of medications to help minimize that pain, and you ARE prescribing it for the proper reasons with proper monitoring, then who cares that someone may be monitoring you. It’s called doing your job. That’s why you get to put the big MD after your signature. If you are afraid to do that job, perhaps it isn’t the right job for you, or perhaps you need to focus some of your time and energy into changing the perspective of those who are doing the monitoring. Doctors who leave their patients who are truly in extreme pain with nothing to help manage the pain are part of the reason suicide is so high among those with chronic migraine.
Migraine needs more treatment option
I know from my own personal experience, it has been extremely hard to find a doctor who was willing to try more than one treatment plan. I cannot explain the feeling as a patient when you try to explain to a doctor that a treatment is not working and they act like you just told them Thanksgiving dinner was gross when everybody else enjoyed it. I am one of those people who are extremely unhappy with their chronic migraine treatment. It is not for lack of researching treatment options, trying new medications, or even trying new doctors. I have time and time again had doors closed in my face from neurologists and headache specialists when their prized treatment did not work for me. I have had several different doctors state that I was just looking for drugs, when in reality I simply want to be pain free or at the very least have some pain free days. It is easy for people to assume that individuals who are unhappy with their treatment plans are not putting in the effort to find something that works, but the reality of the situation is that the migraine community needs more treatment options and way more research on chronic migraine. We need access to well-trained physicians who are willing to go above and beyond to help their patients.
How much has your migraine disease changed or evolved over time?