How Much Should #CGRP Treatment Cost? Weigh In! #migraine #advocacy

We’ve all had those moments when — even armed with an insurance card and/or a prescription savings card — we’ve had to walk away from a pharmacy without our prescriptions or decline an infusion at our doctor’s office or clinic because the price for treatment was simply too high. Today, we have the opportunity to make sure the new CGRP treatments for migraine aren’t priced out of reach.

Right now, the Institute for Clinical and Economic Review is reviewing erenumab, the first CGRP submitted for FDA approval, to determine if it is cost-effective. Its review and final report will have an enormous impact on the day to day lives of many of us living with migraine.

“Insurance companies will use ICER’s final report (as well as other information) when determining if they will cover this medicine (and other medicines in this class that are expected to follow), what tier the medicine will be in on the plan’s formulary, and what types of prior authorization or step therapy will be required. All of this will heavily impact the access migraine patients have to this new class of medicines.” – The Headache and Migraine Policy Forum, Patient Guide for ICER Review of New Migraine Medicine

The ICER is asking for patient input to accompany the droves of information it will be  receiving from biotech companies, health economists, health plans, and medical providers. If you live with migraine, this is your chance to step in and explain what it is like to live with this disease every day and to shed a light on the disability experienced from migraine’s wide-range of symptoms. That information is vital to ensuring we all have affordable access to something that may significantly improve our quality of life.

Patient reports must be received by the ICER by November 30, 2017. This is a short deadline, but your input is crucial! Please consider submitting a response today. The link to the submission form is here: https://icer-review.org/patient-guide-to-open-input/.

If you aren’t sure what to say or how to say it, The Headache and Migraine Policy Forum has some tips and suggestions. They’re also hosting a free teleconference for patients on Tuesday, November 28 at 3:00pm ET, which will address the input period and how to make your voice heard. (Register here.)

It sometimes feel scary or overwhelming to define our experiences with chronic migraine, but now is the time to be heard. Please act now! United as one voice, we can make a difference.

Want to learn more about the CGRP drugs? Check out these posts on Migraine.com:

CGRP Drugs for Migraine: A Patient’s Experience

Questions for Your Doctor Regarding CGRP

CGRP Clinical Trial Update

Presents for Your Loved Ones with Chronic Migraine

It’s my birthday soon, and so I’ve been thinking of presents. Of course, the things I’d really like – pain-free days, the ability to schedule events weeks in advance without fearing I’ll need to cancel, and a brain that allows me to eat cheese – no one can give me. Still, I knew there had to be something I’d want.

And there is.

After days of being too sick to eat, yet in too much pain to make the smoothies I can tolerate when nauseous, I realized a replacement blender might be in order. You know, one of those that doesn’t sound like a jackhammer or a jet plane or any other number of earsplitting objects that make me want to slam my head against the wall. And, it turns out they make these, some for not even all that much.

They also, it turns out, make vacuums that you don’t have to push. (For a price, of course, but less than you might think.) These little robots can move around your house, diligently cleaning up the ridiculous piles of German Shepherd hair that seem to get everywhere even when the dog has been bathed, brushed, and put outside. For someone like me, who is incredibly allergic to said hair and yet can’t always get out of bed or off the couch to vacuum it up and still have the energy left to make the dinner my kids will spill all over the floor, that’s big news.

So that’s what I want. A robot vacuum cleaner and a blender that doesn’t make me want to split my head open with an axe. I feel so adult. And boring.

You Know You Have Chronic Migraine When ...

Still, if you have someone in your life with chronic migraine, consider whether they, too, would like such boring but amazingly thoughtful gifts. If not, consider one of these replacements:

  • A month of healthy pre-made dinners and snacks from a service like Factor75, Splendid Spoon, or Healthy Chef;
  • A one-time maid service;
  • A one-time car detail;
  • An anti-glare screen for a computer monitor;
  • Migraine-specific glasses, like Theraspecs.

Basically, anything that makes life easier, cleaner, and/or more tolerable is a good thing. Any other ideas? Please share in the comments. I’d love to hear them!

The Buffer Zones of #Migraine: The Challenges of the Prodrome and Postdrome when Chronic #MHAMSMC

When I talk about migraine disease and the effects the attacks have on me and my day-to-day life, I tend to focus on only two of the four phases of migraine: the aura and the “attack” phases. This is likely because the aura phase can be one of the most disabling stages for me, personally, and the attack phase is the most understood by those around me. The outer two stages, however, shouldn’t be disregarded, especially at times of chronic attacks.

When I’m chronic, my migraines attacks bleed into one another. Sometimes, I can’t tell if I’m in postdrome or prodrome, until after one becomes the other and I’m experiencing a new aura. But I’m working to get better at it.

There’s a part of me that believes that knowing the exact moment the postdrome switches to a new prodrome will enable me to take actions that may curtail the severity and length of the new attack. Unfortunately, so many of the symptoms of the two phases are the same, especially fatigue and cognitive dysfunction. It’s hard to tweeze them apart unless I’ve had a good day or two in between.

Right now, for instance, I am struggling to work. I woke up exhausted, stiff, and sore, and I’m having trouble concentrating. I’m irritable, and my right hand and tongue have the feeling they get in the time before the tingling and weakness actually start. My right temple and right eye also are offering a harbinger: a nice burning sensation that’s more cautionary than painful.

I’m quite obviously in prodrome, and, for me, that means I’m going to be in aura soon. My prodromes never last very long. But I really only know this because I haven’t had an attack for the past 36 hours, which means I’ve had time for the postdrome from my last attack to wind down. If this had happened yesterday, I may be thinking it was still part of the last attack.

At times like this, when I’m very chronic, and the attacks come nearly every day, I am reminded again of just how disabling the buffer zones of migraine can be. This is when I should be able to work, I think. To catch up on all the things I let fall to the side while I couldn’t see well and felt dizzy, weak, nauseous, and in pain. And yet, I still can’t function at top form.

I’m still struggling to keep up. The fatigue, brain fog, confusion, and overall slowed comprehension of the outer stages make everything take twice as long as it would otherwise (and use up twice as many spoons). I’m learning the buffer zones, while providing a nice reprieve from the pain, nausea, and sensitivities of the other stages, are nothing to be ignored.

How do you manage the prodrome and postdrome stages of your attacks? Can you easily distinguish them or do they seem to bleed together? Please let me know in the comments below.

 

phases_of_migraine-FINAL

(Photo courtesy of Migraine Buddy: http://www.migrainebuddy.com/migrainesymptoms-the-stages-of-a-migraine/)

March #Migraine Blog Round Up

March was a slightly busier month than February (at least here at The Migraine Chronicles), but I have to admit – more happened than I had the chance to write about. Hopefully, April will see that begin to change. In the meantime, here are some great posts you may have missed:

My Posts

Other Favorites

That’s it for this month. Happy reading!

Did I miss something you found particularly helpful? Share it here.

Watching for Signs of Migraine in Our Kids

My 11-year-old daughter frequently complains of stomachache. She hasn’t eaten too much. She doesn’t have a stomach bug. Yet, she complains, again and again, that her tummy hurts.

Suffering from chronic migraines as I do, I know too well how frequently pain can arrive and torment us – even when there’s not a “typical” reason. Yet, as her mother, I am unsure how to react.

My daughter, you see, is notorious for trying to get out of work.

Whether it’s a chore she doesn’t feel like doing or a page of homework that appears at first glance too overwhelming, she’s quick to cry defeat and (quite literally) hide under the table or in her closet. (Yes, I know this isn’t age appropriate or “normal.” No, there isn’t anything to do but wait for her to get her embarrassment and frustration under control.) In short, her intense emotions get to her and she gives up easily – much, much too easily. Though our year of homeschooling has gone a long way toward increasing her confidence and decreasing the instances of such behavior, it still occurs.

So, as a fellow pain sufferer, I want to hold her hand, comfort her, and give her whatever she needs to feel better. As her mother, however, I’m conflicted. I do not want to deny her her reality, but I do not want to let her use it as an excuse. And yet, I know how many of us with invisible illness – myself included – work tirelessly against stigma and the idea that we are “faking” our symptoms so we have an excuse to be lazy. I do not want to make my daughter feel like that.

Often, I tell her that I understand her tummy hurts and that I’m sorry. Then, I say that as soon as she gets finished with whatever it is she needs to do, I will make her soup and get her tucked into bed. Sometimes she takes me up on this. About half the time she decides she is well enough to go out and play after all.

What would you do? I’m sure her stomach does hurt – either from stress and anxiety or abdominal migraine (which can’t be ruled out) – but I don’t know how to respond.

Feeling Grateful

I am feeling especially grateful today. Over the past few weeks, many readers have contacted me to tell me how much my book (Finding Happiness with Migraines: A Do-It-Yourself Guide) has improved their lives – both physically and mentally. They’re sleeping better, feeling less pain, and (most importantly, in my opinion) experiencing renewed hope and optimism about life.

Hearing their stories – your stories, in some cases – fills me with gratitude and love.

I am grateful to know we aren’t alone; no matter what our lives with migraine may be like, someone somewhere knows what we are experiencing. I am grateful that the Internet enables us to find that someone. And, I am grateful that in my own small way I have been able to reach out into the world and be that someone for other migraineurs.

I am truly so, so grateful to be of service, to be able to help.

Life with migraines isn’t easy, but having the support of my readers and being able to provide support in return makes it just a little easier. And, most days, that is more than enough.

 

If you haven’t checked out my book, it’s available for $2.99 as an e-book from Amazon and Barnes and Noble and as a PDF from my publisher. Reviews from readers can be found here and here, as well as on Goodreads, Amazon.com, and BN.com.

 

Returning Fertility, Returning #Migraines

My son is almost 10 months old, and though I am still nursing him about every two hours, my monthly cycles have finally returned. For many women, this would simply mean returning fertility. For me, it means both this and the return of a particular kind of migraine: menstrual migraine.

The vast majority of my migraine attacks are not triggered by my menstrual cycle nor are they affected by hormones (other than cortisol). Some of my attacks are, however, and this was especially true this past week. For almost six straight days, a low-grade migraine kept me and my cramps company from the time I woke up until the time I finally nodded off to sleep.

Thankfully, my menstrual migraines are never as intense as my regular migraines, but their long stay can make them difficult to take. And, because I am still nursing, my methods for dealing with such a long migraine attack are limited. This time, I settled in with a heating pad on my abdomen, an ice pack on my head, and a bottle of ibuprofen to my left. It wasn’t the best treatment I could have tried, but it was the only one I had at my disposal.

I’m hoping my body and brain were simply unfamiliar with the flood of hormones associated with my cycle, and that they forgot how to handle them. I’m hoping that next month will be a little easier to take, with less cramping and fewer days of migraine pain. I’m hoping that eventually my brain will remember how to handle the ebb and flow of my feminine hormones and let me off the hook entirely. We’ll see.