Hope at a High Price

And for many of us who can’t afford an $8000+ price tag,
that’s exactly what we’ll continue doing…and doing…and doing…

I’ve been following the CGRP research and trials with both hope and trepidation–hope because they’re the first drugs developed specifically for migraine prevention and have shown a great deal of promise, and trepidation because the projected price tag is astronomical for the average sufferer.

This article gives a lower projected price than many I’ve seen, but it’s still far beyond reach for many of us.
How long will we have hope extended with one hand and snatched away with the other? Many of us with chronic migraine are disabled and unemployed due to this terrible disease. We can’t afford many CURRENT treatments with a much lower price tag, much less this one.

What good is a highly promising medication if those who need it most can’t afford it?

– Selena

"Most people think of migraine as headaches. But head pain is commonly accompanied by severe, disabling symptoms like nausea, vomiting, dizziness and sensitivity to light, sounds and smells. The disease is far more widespread than realized: About 38 million Americans, or 12% of the population, have them, according to the non-profit Migraine Research Foundation. 

But treatment options are limited. Just a handful of drugs were developed specifically for migraine, though drugs for other conditions including blood pressure and epilepsy have been found to work, too. Still, there haven’t been any new drugs in development for some time, experts say. 

A promising new group of drugs, named after calcitonin gene-related peptide (CGRP), a neurotransmitter tied to migraine, has changed that. CGRP drugs are being developed both to prevent migraines before they happen, and to stop attacks once they occur. 

The former category is closest to being available for patients. About seven million patients would likely get the treatment, estimates Evercore ISI analyst Umer Raffat, with an $8 billion to $10 billion potential market size. 

Amgen Inc. AMGN, -1.03%  has already filed for approval, and Eli Lilly & Co. LLY, -0.21%  and Teva Pharmaceuticals Industries Ltd. TEVA, +1.61%  have plans for later this year.
Alder BioPharmaceuticals Inc. ALDR, -0.85% is also developing a preventive CGRP drug, and further research on the drug class is expected at the American Headache Society’s annual meeting, which began Thursday and runs through Sunday. 

But price and access remain a persistent question. Projections begin at about $8,500, concerning patients and headache experts alike. 

Dr. Lawrence Newman, director of the headache division at NYU Langone Medical Center and immediate past president of the American Headache Society, says that could add on to the “double whammy” of having migraines, which describes the symptoms and stigma patients face. 

“I’m concerned that the patient will again be exposed to that double whammy,” he said. “They’re made to suffer because of the disease they have and because the insurance company won’t allow them access to a potentially effective therapy.”

Read the full article at New migraine drugs have promise — and a $8,500 price tag.

#MigraineAndHeadacheDisorderAwarenessMonth #chronicmigraine #NotAHeadache #migrainenews #MHAM 

Migraine and The Trigger Trap

Image from migraine.com 

Weather and wine and chocolate, oh MY! Those terrible triggers!

(An important distinction here before we continue: triggers are NOT what "causes" migraine. Migraine is a disease that causes sensitivity to triggers (stimuli). If one does not have migraine disease, triggers don't affect them in this manner.)

Today I came across an interesting post from a friend's Facebook about a study on triggers:

 "Our study results show that people with migraine have great difficulty identifying their personal triggers and their suspicions may be overly influenced by beliefs popularized on the internet. Unfortunately, these misperceptions lead to a lower quality of life by people avoiding many things they love but without good scientific reason,” explains Alec Mian, CEO and founder of Curelator Inc. 

The first study examined trigger suspicions in users with episodic vs. chronic migraine and revealed an unexpected disconnect between suspicions and scientific reality. Both groups suspected virtually the same set of triggers. However, after using Curelator Headache, which scientifically determines true risk factor associations, significant differences in triggers were revealed between episodic vs. chronic participants."

The funny thing about this is that it ISN'T a new idea. I've been talking about how triggers may not actually be triggers since reading a few articles in this vein a few years ago, and how triggers are often cumulative, so the most recent events or substance that pushes an attack into existence may be the one blamed, when in fact it's a progression.

Take, for instance, this article from WebMD and one on a correlating study from TIME magazine, both from 2013:

 "In his clinical practice, he sees many patients whose quality of life suffers as a result of both their migraines and their efforts to avoid triggers that they believe will lead to attacks. In addition to light and exercise, other proposed triggers include stress, emotions, and certain foods. 

But there’s little evidence that any of these things really do trigger attacks, says Goadsby. He hopes that, in addition to the current study, there will be much more research on triggers. 

“There are tens of millions of people with migraine,” says Goadsby, “and all they have to go on are tales handed down about what triggers them.”
(WebMD) 

"You eat chocolate and you get a headache. Does that mean chocolate triggers the headache?” Silberstein asks. “What probably happens is the first symptom of your migraine attack is the desire to eat chocolate. Just like when you’re pregnant, you might want pickles or ice cream. That’s one end of the spectrum, where the desire to do something is part of the migraine attack, not the trigger.”  

Distinguishing between triggers and symptoms is challenging, not just for those who study migraines but for patients as well. Silberstein says there are some known triggers, such as certain odors, hunger, chemicals in alcohol and hormonal changes linked to menstruation, but that other factors may fall somewhere between an actual trigger and a symptom. How can patients tell? “Everybody with a migraine should try to find out what is triggering their attacks,” Olesen says. “When they have a suspicion, it would be a good idea to try and see if it induces an attack. In most cases, it’s probably not going to be true.”  

Both Olesen and Silberstein say there are a number of factors that determine whether these suspected triggers will actually lead to an attack. Patients likely have individual thresholds that vary from day to day and from environment to environment: some days your brain is less vulnerable to certain triggers, while on other days the conditions might be right for a migraine."
(TIME) 

The TIME article prompted me to test some of the things I'd previously thought were my triggers, one of which was pepperoni pizza--one of my all time favorite foods and something that is high on the list of things thought to contain classic triggers (aged cheeses and aged, dried, fermented, or smoked meats).
Guess what I found? It did NOT always set off an attack. The times it seemed to were usually times I was already in danger of one, pointing to the cumulative factor, or that it wasn't one.

Now, triggers CAN change over time; as my attacks progressed to chronic, so did the things that could set them off. But many of those were environmental or cumulative. Some were unavoidable, like weather--scientists don't know why weather/barometric pressure are likely to set off attacks for so many of us, but it has shown that it does. Others were fragrances like perfumes or cleaning products (bleach is the number one).

When I became daily chronic, triggers more or less went out the window. Nothing actually set off an attack as mine was 24/7, 365, but some things could certainly worsen my pain/symptomatic level. Weather is still the most reliable one, but fluorescent lighting is up there, along with odors and certain chemicals. Too much exercise can exacerbate it, but carefully paced exercise or exertion may or may not. I seem to have a stunning zero food or drink triggers...and I suspect some of us may have less of them than we think.

One of my friends is entirely triggered by environmental allergies ; she's literally allergic to the environment.
I know allergens in the environment affect mine adversely.

The takeaway here: triggers may not be what we've thought they were, either in what we think they are or in their influence on migraine. This may not change how you see them, but it's worth following.  

The Love/Hate Relationship I Have With Medications for my Illnesses

I truly wish more people understood this about chronic illness:

We are not drug seekers.
We’re not after pain killers–we’re after treatment that will reduce pain.
Big difference. 

Many (if not most) of us have a serious love/hate relationship with our medications…even the ones that work for us. Possibly especially the ones that work for us.

The thing is, many of the meds we take have side effects.

I know, everything has a side effect. Something making you feel better is a side effect, if you want to get technical. I’m talking about things that, even as they help us, make us uncomfortable and actually sometimes as unable to function as we were before taking them.

Weight gain. Weight loss (yes, that can be a negative). Loss of sex drive. Hair loss. Stops the attack/pain, but knocks you out/leaves you in a fog. Impairs your mental or cognitive function- memory, ability to concentrate, etc.

And guys, I’m 100% serious when I say sometimes these are only the MILDLY annoying side effects.

I’m not even counting the “oh my god, what is this doing to my body in the long run” concerns. Or the fact that they don’t always work 100% or at all. Or realizing that there is no one magic treatment or doctor that will give us our lives back. Or that many treatments are expensive or limited by insurance.

And I know- you’re thinking if something has an unpleasant side effect, what’s the big deal? Just stop taking it.

And there’s the rub.

Because when you’re sick every day, you learn that you have to weigh the evils sometimes.

“Am I willing to deal with ___ so I can not hurt today?”

“Am I willing to deal with pain, etc., so I don’t have to take this one?”

“Can I function through the day if I don’t take this?”

And the big one: “Is feeling better worth this?”

Sometimes it is…and sometimes it isn’t.

Sometimes I skip meds so I can function, and sometimes I can’t function without them.

I can be both thrilled to have them and loathe them at the same time.

And I’m not alone.

We are legion…and we’re tired of getting the side-eye and judgments that come along with living with disorders that we didn’t ask for.

Why should we be treated as if we’re wrong to want to feel better for a while?

Wouldn’t any of you do the same?

Hard question to answer.

Most of us are still trying to answer it every day.