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

My views:

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.

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

View Comments (10)
  • Dana
    12 months ago

    Amanda Workman your comments about off label meds and other expensive treatments really hit home with me. I’ve been on seizure meds that turned me into a dope, beta blockers that dropped my blood pressure so low I would pass out and being on state insurance…..they deny anything and everything and the doctors don’t want to or have time to fight for you. So what do they do….. wash their hands.

  • Dana
    1 year ago

    Steve Workman (spouse and caregiver) hit the nail on the head; a lot of these neurologists are one trick pony’s and when those horrible words come out of their mouths “maybe you should see a pain management specialist”…. they have already wiped their hands of you. Doesn’t matter what you think or not and pain management is a joke, you walk in and are immediately treated like a junkie. If you can fix me without pain meds, perfect…that’s what I want, if you can’t … give me pain meds. As pointed out, that is your job….. make it so people who are in pain aren’t in pain anymore, right? I would like to give every doctor a migraine, just one, but a doozie, you all know what I’m talking about…imagine your worst. Then I’d like to talk to them again about “treatment options”.

  • Amanda Workman moderator author
    1 year ago

    Danadibs1979
    I completely agree on so many levels with your comments. One of my first articles I wrote was about gifting a migraine so people could understand better.
    https://migraine.com/living-migraine/ever-wanted-to-gift-a-migraine/
    You’re both correct, when the specialist sends you to the pain management doctor, that specialist is done with you as a patient. The pain management doctors are so worried about who is monitoring the prescriptions they write that they don’t want to write any at all. It’s really a sad situation for those of us suffering everyday. But for now it doesn’t seem like we are left with many options right now, except frustration.
    Amanda Workman

  • youkayn00b
    1 year ago

    I am in the UK so things are a bit different over here. Very difficult to get referrals to neurology or anything like that. I was having a difficult time with treatment through my GP, then by chance happened to get an appointment with another doctor in the practice. She is fully committed to trying EVERYTHING possible and has already helped me to isolate some pains which were escalating to migraine – but not strictly migraine proper (chronic sinusitis from sinus cyst). She is also cycling through all the possible medicines – trying gabapentin now.

    This is proving to be a much better experience than usual. I have seen many doctors in the UK (and Canada before that) and really felt like nobody could help me manage my care. I think treatment for chronic migraine is generally really ineffective and frustrating. We are treated as drug-seekers and malingerers. Research needs to lead the way here, I think

  • Amanda Workman moderator author
    1 year ago

    In the US, most insurances do not need referrals anymore. Here a primary care or GP would only treat you as far as an abortive for an episodic migraine type of health concern. Anything more than that and they want you to see a specialist. And unfortunately these specialist do one or two major treatments and if those don’t work, you’re stuck trying to find another way.
    It definitely sounds like you have a better system worked out than we do here. I believe the medical community has a long way to go to improve the care for chronic migraine patients.
    Amanda Workman

  • litoria76
    1 year ago

    My neurologist has run out of treatment options for me. I went from episodic migraine to chronic daily migraine and have 25+/30 days a month of nausea, dizziness, light sensitivity, olfactory and auditory hallucinations, blurred and or double vision, and severe unilateral stabbing eye and face pain. The only thing I can take that won’t interact with my other meds is Percocet which she will only allow 30/month which I’ve built up a tolerance to over the years. My neurologist has actually told me she thinks it’s all in my head (curious since I usually wake up with them). I’m afraid to go to a headache specialist because I am scared my monthly Percocet prescription will go away, which i had to sign a contract with my neurologist to continue getting, and is the only thing that gives me a few hours of relief… I’m also trying to get SSDI through that neurologist so I am afraid of switching neurologists.

  • Amanda Workman moderator author
    1 year ago

    Can you try to get a consultation with a new doctor and see what you think? That would not necessarily break your contract with your current doctor but it would allow you to get a feel for the new doctor and see what they would start with for your care if you were to switch to them prior to actually switching.
    Sometimes while it’s scary we have to be willing to fire our current doctors and find better ones.
    https://migraine.com/living-migraine/firing-your-doctor/

    Amanda Workman

  • Bean
    1 year ago

    Amanda, I have had the exact same experience. I’m currently spending HOURS strategizing for my next follow-up appointment so I won’t offend my doctor, but will also (hopefully) nudge her toward doing something new since her “one trick” has failed. I’ve also been the route of pain management that doesn’t actually manage pain.

    I really feel like there isn’t enough attention being paid to how those of us with chronic migraine are being left without adequate pain management. If ever you want to expand this post into something larger, I would be happy to share my experience! Wishing you some pain-free days in the near future.

    Beth

  • Amanda Workman moderator author
    1 year ago

    Bean
    It’s definitely a challenge beyond challenges. I have left a specialist because she was stuck on nerve block injections which didn’t do anything for me but make me miserable and as your concern, I lost my Percocet in the process. So I definitely understand that feeling. But there are a lot of different doctors with different treatment options. You are most welcome to reach out to me for help on navigating some ideas for treatment considerations and your ideas on the expansion of this article. Stay strong and remember we are here for you.
    Amanda Workman (moderator & contributor)

  • Colorado4Now
    1 year ago

    Please, please, please if anyone is in Colorado or especially near the Denver area and having problems finding a good migraine specialist see Dr. Judy Lane at Blue Sky Neurology. I have been seeing her for years. She is everything you want and need as a chronic migraine patient. Dr. Lane never gives up. Blue Sky Neurology takes Medicare and other insurance as well (uncertain which ones). Another great doctor in the Denver area: Dr. Ravi Shah. But I would drive over a hundred miles to stay with Dr. Lane. She is that good!!!

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