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The Magical Mythical Migraine Pill

There are two types of Migraine myths — those that non-Migraineurs create for us, and those we create ourselves. They seem to fall into two categories: Snake Oil and Magical Pills.

I’d like to spend a few minutes talking about these myths and hopefully lend some encouragement. I’m struggling with these issues myself, so please stick with me to the end…

Snake Oil Myths

We can cure your Migraines in 5 easy secret steps!

I haven’t had a Migraine attack since making this one small change to my lifestyle, and you can do it too…

This experimental surgery/treatment/pill will permanently relieve your Migraines and change your life.

These are the myths that can create a small spark of hope in even this Migraine advocate’s eye. But, myths they are, and we need to remember that they are myths.

Every day I talk to patients and each day I have the obligation to tell at least one patient that there is no cure for our disease. Yet. If there were it wouldn’t be a secret, we’d all be using it — GUARANTEED!

There is no Migraine treatment that works for everyone.

Surgery may make us feel better that we tried something truly drastic. It may even help those around us to understand the depths of our desperation. Right now that option is experimental and it cures nothing.

If the evidence for a treatment (drugs or devices, including surgically implanted devices) is truly overwhelming, it will be FDA approved as fast as possible.  Recently, the FDA has initiated their Patient Focused Drug Development Initiative, designed to include patient feedback about disease effect and burden when reviewing drugs for approval.

There are no cures for Migraine disease. Research is ongoing, and hopefully we will soon find something that helps all of us. Until then, there are no treatments that are going to be helpful to everybody. None. Good doctors with proactive patients ready to do the hard work that is necessary to get better are those who will be seeing the best results in this new year. I hope you’re one of them!

Magical Pills Myths

It breaks my heart to see patients dig in their heels with their doctors and their treatments. Patients often expect miracles from their doctors and from the treatments they try, yet they don’t understand that what they’re expecting are miracles. Yes, there are many, many treatments we can try along the way, but this disconnect between truth and reality can damage the patient as well as his/her physician relationship, leaving the patient struggling and searching… never finding what they’re looking for.

When a Migraineur still has frequent Migraine after a drug trial, they often get angry and depressed. They expected this to be the medicine that would change their lives. Going from daily attacks down to 15 Migraines a month is often not sufficient for their expectations. They want more. They want their lives back. They lose trust in their doctor’s judgment and abilities, and they often throw the baby out with the bath water in terms of letting their frustration with a chronic condition dictate how they proceed. For example:

  • A new medicine *may* cause a side effect they don’t like. A patient refuses a drug because of something it *may* do. Or maybe they try the medicine, but a side effect hits that is unpleasant. This is sometimes a reason to discontinue a medication, but side effects are often transient, and I always encourage patients to stop and consider the next 3-4 months a good medication/treatment trial will take in comparison to the years they have lost to their disease, or the years ahead of them. Is 40 years feeling better worth the next 3-4 months of your life? Even feeling lousy? Which is worse – the side effect or living with Migraine and the possibility of progression to a worse situation? We must all make those decisions for ourselves, but we need to be smart about them.
  • A patient worries that the process of a drug trial will cost them a job, or their family relationships, so they bypass the lengthy trial for a drug or treatment that is known to be helpful for some patients, for an obscure one they believe might help them yet be less intrusive.
  • A patient with medication overuse headache or a bad habit like smoking, or poor sleep, exercise or eating habits which are complicating their Migraine treatment or triggering their Migraines, refuses to seek help to fix their problem first and continues to look for a magical solution that will work miracles despite what they’re doing to make their Migraines worse. The results of these self-sabotaging actions are often more pain and disability, and that drives patients to such desperation they will act dangerously, trying nearly anything. Specialists often refuse to address these patients’ destructive lifestyle choices because they know patients will get terribly angry with them. Patients often want to hang onto their comfortable habits and simultaneously find the relief they believe is out there despite what they know they need to do.
  • Patients desperate for relief from their suffering will give up their search for a good specialist in favor of someone less knowledgeable who offers pain relief alone. They’ve stopped caring about the neurological issues and have been seduced by the promise of doctors who don’t even know how to treat the Migraine itself. This is a trick that many of us have been fooled by. YES pain relief is necessary for us to live our lives and is sometimes necessary as a rescue, but when that magical pill is taken too long and eventually causes patients to become worse and ruins their lives even further, it makes me as an advocate cry *foul*.

I know we’re worried about our families and bosses and friends and how they feel, as well as keeping up with our obligations. Instead of looking for a magical pill, let’s talk to them so they understand that this is important for us to try and that it might result in feeling better and doing more. Make arrangements ahead of time so we have less to feel guilty about. Encourage our kids to encourage us, ask friends and family and other Migraineurs to help hold us accountable. This makes them feel involved, needed and important too.

I know this post may smack of blame, but it’s not intended that way at all. I hope it’s empowering. Being a Migraineur is hard work! We all have things we can’t let go of and things we fear. Most of us have been here at some point or other. What I mean is… lets all work together and support each other as we strive to do the things we know we really should do, stop doing the things we know we shouldn’t, and remember that we need to be careful of those things that sound too good to be true. Yes, sometimes we are desperate, but we don’t have to stop being smart.

Let this post help to relieve some of our fears, allow us to step out in courage in 2013 and work together toward a better Migratude!

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

  • Christy
    6 years ago

    Thank you, Ellen, for this. The hardest battle I fight is with my dad. He wants so bad for me to be all better. Plus, he believes every “I tried ____ and my migraines are gone!” story he hears, so he is forever calling me with something new I need to try that will “cure” my migraines. I’ve told him countless times that there is no cure for migraines, but he just doesn’t hear it. He knows I’m going for my first Botox treatment next week and he keeps saying “Won’t it be great to have a Thanksgiving without migraines?!” I’ve explained over and over that Botox is not a cure, that the first treatment likely won’t be very effective, but he just won’t hear it. I know he just wants me better, but it’s much harder to tell my own dad to stop bringing me “cures” than it is friends or acquaintances.

  • Ellen Schnakenberg author
    6 years ago

    Christy,

    I’m so sorry you’re struggling with this. Eventually I think he will see and begin to understand, but it is likely to take many, many years and many tries at treatment. Hopefully you will find something that works. Most patients eventually do. However, as you know yourself, there is no cure, so the dream of the disappearance of Migraine attacks is beyond our grasp for now. There really are some interesting things coming down the pipeline though. As I get ready to attend Scottsdale conference next week, I am getting more and more stoked about the things we’ll be updated on, learn, and see. I just wish progress wasn’t so durned slow!

    ~Ellen

  • Julie
    6 years ago

    I get bombarded with some of these claims by extended family and friends. So much over the years that I at 1st responded in anger but then calmed down when I realized that because we are so stigmatized by this disease that other people that don’t experience these migraines just cannot understand or they don’t want to get it.
    As for trying different medications I know I’ve tried over 50 to date in the last 25+ years. When a new med or med combo doesn’t seem to be “It” my spouse who is not that emotionally supportive will turn real negative and say things like “nothing is ever going to help you” or “your going to tick off the doctor because he’s trying and your not responding”. Just a sampling of the remarks I get.
    It is discouraging when a new med or combo of meds doesn’t work but I have realized long ago that this is going to be a long and bumpy road with many, many trials. I can only work on improving myself and eat well-avoid all my food triggers with a vengeance! I take my own food to family gatherings and get “those looks” but I learned to ignore them and explain why if asked. I still get the looks like I have 3 heads or more! LOL. What can you do but learn over time to take it with a grain of salt. I keep trying alternative therapies to go along with traditional. I try to get my sleep but chronic insomnia has been a problem and the doctor is working on that as well without turning me into a walking pharmacy.
    But the things that hurt migrainers the most is those hyped claims because that makes us look bad in the eyes of those that live with us and work with us. They think we are lazy and not trying these “miracle” cures and therefore this disease we have is our fault and we deserve it.
    All I can suggest is to do what I have finally learned to do (after many, many years of practice). Block out the negative and focus only on the positive. When someone or yourself says “your never going to get better” just think and reply “today is a bad day but there is always tomorrow”. And then deep in your heart and mind repeat those positive mantra’s until your positive vibes will block the negative ones. You cannot let the outside world bombard you and beat you up because it will chew you up and spit you out without hesitation. I learned to do meditation again, listen to meditation music, have gotten into aromatherapy, massage therapy, Vitamin supplements, trying to get into a routine of gentle yoga (to help with FM as well) stretching often, and NOT letting myself get worked up over things I cannot control-like other peoples ignorance, or trivial things because life is too short to be ill-tempered, angry at oneself or others, angry at your situation as it compounds stress and really doesn’t accomplish anything in the end, and ignore hateful hurtful comments. You have to take care of yourself and not worry about the others. And work with your doctor, when you finally find a good one like I did just almost 3 years ago-and he has been working with me and is my best advocate.
    It’s all about perspective and education. Find a good website like this one and send links to family and friends. They need to be educated. And I always look online to research when I can because it never hurts. And if I come across a treatment or med I want to try I learn about it, take it to my doctor and he will say yes or no and if it’s no he makes it clear why and which it’s usually not the time. And we always go by the 3-4 month rule for a new med regimen. Some meds I found the hardest part is weaning off them to try a new one!
    This is a great article and again reminds me why I love this site so much! I wish everyone good luck with their treatments and stick with it and take care of yourself. Blessings to you all. Julie

  • Ellen Schnakenberg author
    6 years ago

    Julie – What gets me is the confusion the hyped up claims can cause patients. There are treatments that can be helpful – thank goodness for that. However, I wish I could get across to every person in the US that Migraine disease is a spectrum, and we all fall at different points of that spectrum. Treating us can’t be done in a cookbook fashion. It’s not like *their* headache, where they pop an aspirin and keep on with their day.

    I am very pleased to see that you are trialing your meds and giving them what looks like sufficient time to see if they might eventually help you. And I very much agree – weaning off a drug to start another treatment is so very hard!

    Keep up the good work. You’re on the right track. I think eventually friends and family will realize this.

    Hang in there!

  • 100dollarheadache
    6 years ago

    good info. unfortunately i have tried other things recommended to me by others for migraine remedy. my neighbor told me , but flax seed oil and fish oil tablets every day. i would get migraines in the past, she said. the day i started these 2 supplements, i have not had a migraine since. so i gave it a shot. i took then every day for a couple months but it had no effect on migraine control. i still had several migraines that month. i also had indigestion from fish oil, causing fish burps, nasty. another time at christmas i was at a family party and one of the people invited was an acupuncturist. i too tried that, i had no improvement and it was costly when you add in how expensive migraine medication is. i have also had head and neck massage, which really does relieve tension, feels good and is relaxing. i still suffered with migraine pain. it destroys 1/2 of my month, at least. when you are desperate, you will try anything that makes sense. i also had my eyes examined by a doctor. even since turning 40 my eyesight has diminished slightly. i got reading and driving glasses. that did not help, although i could read better. my neurologist also sent me for a sleep study. i hoped this may improve my migraine. i was diagnosed with sleep apnea, pretty bad to. my oxygen levels were very low when sleeping. the tech said i stopped breathing about 40 times in an hour. my oxygen was 88 to 90, which is bad for you and your brain. i immediately was put on a c pap machine to help and control my breathing and oxygen.it was amazing how helpful it was with my sleeping but it had no affect on my migraines. that was a big letdown for me. it seem to make sense at the time addressing the sleep apnea should improve my migraine episodes. i was waking up much more refreshed and energized. i was always fatigued prior. i could fall asleep anywhere. there were times it got out right dangerous, i would nod off driving, sometimes the kids were with me. i am glad i addressed it but disappointed that my migraines did not improve.i have been on c pap therapy since 2007. i religiously wear my mask every night. sometimes i have issues such as being congested and that has an effect on the therapy, leaving me fatigued and sleepy.lack of sleep, hunger as well as other triggers such as artificial sweetener, nitrates, bright sun, over exertion and stress have caused me bad migraines. so bad i can not function. i vomit to dehydration, i takes compazine and migraine meds, zoomig tabs, imitrex nasal or needle. along with their side effects , i am comatose for hours. i wake to light and sound sensitivity , dizzyness, headache and very thirsty. these symptoms last up to 2 days depending how quickly i get my meds in my system.i wish there was a miracle cure . i would not wake up every day fearing another migraine. another day of missing family activities, weddings and life in general……

  • Ellen Schnakenberg author
    6 years ago

    I think we are all with you on this one 100dollarheadache, and I think that’s why these hyped up claims are so intriguing to us all. We are exhausted from struggling with this disease for so long. We want relief, not another fight. We are the perfect *marks* for those that would hurt us.

    And here’s the thing, some of those that tout these *cures* actually believe that they will help everybody! They’re not trying to be dishonest. They often have had a good experience themselves and then hypothesize that if it worked for them, it will work for everybody.

    Sad that it doesn’t truly work this way.

    Hang in there. With each new day comes hope that things will improve for us all!

  • Cathy Ferguson
    6 years ago

    I agree with your comments. I am an almost 45 year old woman who has suffered from migraines since age 17. I have fought against physicians who tried to claim it was all in my head (psych not physical) and against those who simply wanted to push pain pills at me. It is difficult at times to explain to medical doctors who should know better (or so I would assume) that pain pills do not help migraines, at least not mine. They merely cause rebound headaches that can make the migrain even worse than before. What I need is something to open the blood vessels as my migraines are caused by constriction of my blood vessels in my brain. I actually have been prescribed nitro as the migraines began causing heart spasms and the nitro eases the migraine symptoms slightly as it opens the blood vessels in my brain ever so slightly. I wish that doctors understood more about what they were treating so that they would not simply throw pills at people and would actually attempt to find a cure, find a means of solving the problem so that we wouldn’t keep getting these migraines. But, more than that, stop treating us like we are making it up, like we are drug seekers. when I see my neurologist I keep telling him, I do not want pills. I want answers. I want to find a cause and fix it. I hate taking all of the preventative meds and then having to take the emergency meds to treat the breakthrough migraines and also the daily headaches caused by the preventative meds. It’s a never ending cycle.

  • Ellen Schnakenberg author
    6 years ago

    Cathy Ferguson – Thank you so much for taking the time to comment here. It makes me wonder about what kind of doctor you’re seeing though, as most headache and Migraine specialists really are not going to fit into that box you just described. Here is a list that might help you figure out if your doctor is a specialist, or where to find one that might be more helpful to you: https://migraine.com/blog/looking-for-a-migraine-specialist/

    Remember too, that treatments are NOT limited to a handful of pills. There are many other potential *helps* out there for us ranging from common to uncommon, easy to very difficult. We just never know what we’re going to react well too, until we do. This is one reason why having a knowledgeable doctor is so very important though. They can help weed through a lot of those potentials to help you figure out which shows the most promise for you.

  • Candy Meacham
    6 years ago

    Great article. I’m in total agreement – almost. However, I’d like to point out that NOTHING is approved by the FDA quickly, and the FDA and its approval process is influenced by all sorts of politics and funding issues. Second, there is a huge bias in favor of drugs to abort not prevent migraine. While abortives are important, what we all need are more ways/ medications/etc. to prevent getting them in the first place, but that’s not where the money is.
    Art of Migraine

  • Ellen Schnakenberg author
    6 years ago

    You’re right Candy, drugs take forever to get approved. So do devices. I have mixed feelings because, as a victim of a medical mistake/accident on a process utilizing approved meds and a surgical procedure gone wrong, I want to see patients well protected. I also want to see desperate patients with few options able to try new options. So the question becomes, where is the happy medium that gets patients the treatment they need quickly, with the fewest risks?

    The fact remains that there is no cookbook approach to treating us all. If there were, and were obviously safe, we would all be clamoring for it. FDA approval takes time, but when there are no questions and high needs, things happen faster. There just isn’t anything that fits that bill yet. Thank goodness we have doctors that are helping us find new options, and working for us with Congress to get funding accomplished that is geared toward finding new targets etc, instead of versions of the same old treatments.

    Right now there are a couple of surgeries being done here in the US – one of the most popular which has been getting the majority of conversation on migraine.com utilizes a device that must be FDA approved. Surgeries that do not utilize devices do not need approval by FDA, which is both good news and bad news for both patients interested in them and doctors who want to recommend these options but don’t feel they can because they so far lack the evidence for safety and efficacy that most specialists want to see before getting their desperate patients’ hopes up.

  • mrsbrimtown
    6 years ago

    Good post! Hey nothing wrong with holding yourself accountable.

    Honestly, I always blame myself when I get a migraine. There’s so many triggers that I can’t seem to get a grip on all of them (or even 1/2!). And I stopped taking the preventative without telling the doctor first. Not to sound bad, it’s just being honest. It really is my fault.

  • Ellen Schnakenberg author
    6 years ago

    mrsbrimtown – There is a huge difference in holding yourself accountable and blame. There are certain things we can do to help ourselves and maximize our lives, and others that we have no control over.

  • Vicki
    6 years ago

    The first time I tried Topamax years ago, I got all the strange side effects….metal taste, electric shocks, lol. But, I started getting relief from day one!! It took about 6 months for the side effects to subside, but it was worth the wait.

  • Ellen Schnakenberg author
    6 years ago

    Vicki – thank you so much for hitting the nail on the head (pardon the pun!) As a patient, I really needed to hear these kinds of stories because it gave me hope that there was something better for me if I could just wait. A friend of mine told me “Never ask God for patience, because He’ll make you use it!”

  • body
    6 years ago

    Well written, Ellen. As a victim of medication overuse, I can tell you it can make your life unbearable rather than give that miracle cure you thought you had :(. In my case it was Imitrex and I found that if I took it each time a sensed a migraine on the horizon I could carry on my hectic lifestyle without pain, nausea and drowsiness. I crashed. A new internist was the one who told me I had to reduce my dependence on the medication. From him, I learned medication is not the only answer. I ended up trying acupuncture and discovered that one has to take responsibility for their own health. For example, trigger identification and management. We all know it’s difficult and means a lot of sacrifice. However, what’s worse-eliminating triggers you identify or spending your days in the dark? We all know there is no “magic cure” but there are many options out there that can give us a better quality of life if we are willing to give them a chance. One thing I would add, is that the comorbid diseases we each have can complicate our situations. Not only do they make diagnosis difficult, they also influence our response to treatments. You guys are a great source of information and direction to specialists for many sufferers. Keep up the good work. Loving your positive attitude :).

  • Ellen Schnakenberg author
    6 years ago

    Thank you so much for sharing your story. I think we all *know* there is no magical cure, yet a good majority of us are still out there looking for one nonetheless. In my experience, it takes a lot of work and a lot of changes to live a better life. It’s one of the hardest things I’ve ever managed, but one of the best too 🙂

  • mjohnson7377
    6 years ago

    I suffered from my 1st migraine during my pregnancy in 1992. Over the years, they progressively got worse. These last 6 years have been horrible with migraines almost daily. I’ve been to every doctor, specialist, pain management, etc. and have tried all the different meds, chiropractors, acupuncture, etc. I recently ended up in the hospital for 6 days after experiencing seizure like activity (most likely caused from the withdrawal of Cymbalta I was taking for fibromyalgia). I am a firm believer that everything happens for a reason. The neurologist assigned to me took me off my imitrex (taken at onset of migraine), zofran (taken for nausea associated with migraine), and norco (taken for fibromyalgia and lower back pain). He also gave me a strict diet of no wheat (causes inflammation), no caffeine (causes blood vessels to constrict), and no dairy (which apparently is what was causing my IBS). My meds now consist of cyclobenzaphr (a muscle relaxer taken up to 3 times a day as needed for lower back pain as well as tension I carry in my neck/shoulders), Reglan (used for nausea since some ingredient apparently helps with the migraine as well), naproxen (an anti-inflammatory taken at onset of migriane), and verapamil (taken before bed as a migraine preventative. While in the hospital I only had 1 migraine which was caused by the extremely potent glue they used to attach the leads to my head for the EEG. Since out of the hospital I have had 2 migraines with 1 being caused by waiting to long to eat dinner and I’m assuming the other was caused by stress. I am amazed, to say the least! This neurologist was absolutely correct when he said that the triptans and narcotics were doing more harm than good by creating rebound migraines and since cutting wheat out of my diet my back pain and fibromyalgia pain are at a minimum. I was always very skeptical of others saying diet means the world, but I have to admit now that they are correct. It’s difficult to have such a restricted diet, especially while eating out, but in the end it is, without a doubt, well worth it! Over the last 6 years I lost many friends since I was no longer going out and socializing. Over the last 2 years I lost my job and barely speak to my family and rarely ever leave my home. Now that I’m feeling better (doctors are still trying to figure out why I now have major muscle fatigue, but I’m hoping it’s just my body adjusting and will pass soon) I am sooo excited to start living my life again…instead of watching everyone else from the sidelines!
    Bottom line….never say you’ve tried everything until you actually do (including those things you think are ridiculous and couldn’t possibly help)!
    Here’s to hoping others will read this and find the same relief I have. 🙂

  • Ellen Schnakenberg author
    6 years ago

    mjohnson7377 – Thank you so much for your reply and comment. I am very thankful that you have found a way to better manage your Migraines. My goal with this post is to get patients to think a little more clearly about the kinds of treatments they try, and how they try them. Also, to keep an eye out for how our ideas of what constitutes a *treatment* changes throughout time as we learn more. A treatment is NOT A CURE.

    Desperate patients need to be smart, because a patient who is on the verge of ending their life that tries somebody’s cure-all, then is told they have failed or that it’s “all in your head” will often choose instead to end their struggles. That is why the way we go about trying treatments is so important, and the fact that we’re seeing the kind of doctor that is best able to help us.

    Hey, once upon a time a doctor said that bacteria was causing stomach ulcers, and he was ignored for years. Eventually enough research was done to prove that he was indeed, correct! However it took that research to pinpoint how to treat those patients appropriately, and stress is still considered an exacerbating factor in those patients. There was more to the story that needed to be teased out.

    We need to be open-minded, but not at the expense of being careful, and smart.

    As of yet, no miracle *cure* is out there for us.

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