When it Comes to Getting Your Meds, BE RELENTLESS

I’ve had migraines for 45 years, and for the last 10 years I’ve had them daily. I could probably write an instruction manual on strategies for getting the medication you need to manage your migraines. But if I had to sum it up in two words, it is these—Be Relentless.

Don’t let your insurance provider off the hook. Their limits are a number suggested by the FDA based on averages. I take triptans every day of my life. Nine pills a month would leave me in migraine hell and unable to function. Work with your neurologist, and if you don’t have one, get one. If you have a lousy one, get another. They are your best partners in managing your migraines. Remember, though, you are your best and most eloquent advocate. Use your voice.

Get a letter of medical necessity from your doctor. If it’s denied, keep going. Find out why. Keep going up the chain of command. Relentlessness is your friend.

If you take triptans, you can get prescriptions for several different ones in the same month. Although most migraineurs will have an optimal triptan out of the seven on the market, there might be a couple that can function as rescue meds when your primary runs out. Work with your neurologist to find out the best ones for you. It’s a stupid run-around necessitated by drug limits, but it’s better than nothing.

I found the same thing applies for different formulations of the same triptan. For instance you can often get multiple prescriptions per month for the same triptan in different strengths, for example Relpax in the 40 & 80 mg. versions. Or different formulations of a particular triptan, say a pill version, a rapid-melt pill version, and a nasal spray. Or injectable, pill and nasal spray. Here’s where working with a good neurologist is key. Sometimes you have to kiss a lot of frogs to find one.

A good neurologist, especially one who specializes in migraine—scarcer than hen’s teeth, I know, but if you have one within driving distance do whatever you can to get in with that person—can come up with combinations that you may not have considered, and has access to money-saving programs that he or she can put you in.

Another suggestion I have for migraineurs is if you find your medication of choice is not working, see if your pharmacy has switched manufacturers. Generics are not all the same, and one manufacturers product may work while a different one may not.

I had three months of unrelenting misery a year ago when my triptan unaccountably stopped working. Once I realized the problem, I was back on track. Migraines take a LOT of managing.

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

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  • Katyb
    3 months ago

    Hi katetyndall!
    Your story is very similar to mine. I, too, have had migraines since I’m 18 and am now 65. I’ve been to neurologists and one famous headache clinic many years ago. I tried all the preventatives – too many to list, but THE worst one of all was an anti-epileptic and it made me feel like I was going crazy. I complied with all instructions of my doctor – get the monthly bloodwork done, etc. etc. and in the end he said I was the perfect candidate for Botox injections. I was all in for “anything” offered to stop my daily or almost daily migraines.
    He got my insurance to pay as I was “certified” as a daily migraineur. Well, to say those injections were a nightmare is putting it mildly. They made my migraines worse and much more intense. I made an appt. to see the doctor to tell him and I got brushed off as being the “only one” that ever complained of that fact. Needless to say I never went back and suffered for 3 months until they wore off.
    Now, my primary care doctor prescribes me one per day. I told him I gave it my best shot and nothing works. So, I have the comfort of knowing I don’t have to count pills and be paranoid of the next attack and will I be able to work, etc. I’ve had no side effects whatsoever. I get bloodwork done every 3 months for liver & kidney function and had an Echocardiogram to see if my heart is doing ok with this usage.
    Many doctors will tell you that it’s the insurance industry that has the limit on the triptans due to cost. Where do they get the number *9* from? Some people need more to have quality of life. If I don’t have that and am in bed half the month lying in a dark room with ice packs on my head, what’s the point of that?
    You are very fortunate to have found a neurologist that even prescribes you Imitrex! Every one of the neuros I’ve been to or have heard of from other people don’t even prescribe one tablet! They give you all this other junk that messes with your mind – i.e. antiepileptics. You feel out of it and have major brain fog. And, for some people, it still doesn’t help that much! I envy others that have no side effects and are pain-free on their preventatives.
    I agree, too, with your statement about generics are all different. I went through that phase, as well. Bad generic of 30 pills and it didn’t do squat.
    Good luck to you and to everyone who has this terrible cross to bear!

  • jmedlin
    3 months ago

    I take relpax daily too, with the blessing of my doctor. I get migraine symptoms everyday, don’t know if it’s pre, post or continuous migraine anymore but it’s the only thing that works. A few times I have forgotten, my migraine really ramps up. Nothing seems to cure my migraine but the meds allow some living of life. I was told that taking daily meds may bring more headache but often that’s the easiest part of migraine to deal with

  • Nancy Harris Bonk moderator
    3 months ago

    Hi katetyndall,

    That you for sharing your thoughts and tips with us. I love this – Be relentless -that’s a great mantra!!

    Not to be a “Debbie Downer”, and if you’re already aware of this, forgive me. I wanted to mention a word about triptan use. They aren’t designed to be taken every day, rather 2-3 days a week, to reduce our risk of getting medication overuse.
    I just saw this fro the American Headache Society that may help; https://americanheadachesociety.org/news/medication-overuse-headache-qa-todd-schwedt-md-fahs/.

    Nancy

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