Migraine Presents Differently For Us All

The online world is full of articles, infographics, and stories from those of us with migraine about things we wish those without migraine knew and understood about the disease. There is much less such information written to others with migraine, but I think there should be.

The disease presents so differently for each of us, and we’re all at such different stages of living life with migraine. That’s why I recently wrote a piece for Migraine.com about what I wish others with migraine knew about my disease. Read more here: https://migraine.com/living-migraine/the-differences-among-us-what-i-wish-others-with-migraine-knew/.

What about you? What do you wish others with migraine knew about how the disease presents for you? I’d love to hear what you have to say.

The Meds of Medusa

This is a wonderful post from a friend of mine who also writes for Migraine.com. Like my friend, I have walked an arduous path with my migraine disease. Like she has, I have tried nearly everything ever recommended to me. Like my friend, my disease still cycles through periods of near hell. Those of us who have been walking with migraine for a long time do what we can to survive – and thrive – through those toughest times. Thank you for sharing your story, Lady Migraine! I applaud your bravery.

lady migraine 365

As my neck is still horribly stiff and painful in a way that feels connected to the 9 day old migraine that was finally obliterated on the second floor of Wood County Hospital Friday morning at 10 am, I am sitting here thinking of the amount of medication it took to truly break it. In a way, this isn’t the most accurate way to think of it – 1 headache, 29 doses of medicine. Many with chronic pain will never feel a “0” on the pain scale again in their lives, but I do, and often. My migraine attacks are still able to be identified as individual episodes. The seven days prior to my first ER visit Wednesday, I was able to keep the pain low enough most of the time with Imitrex or Fioricet and Zofran tablets and over the counter helpers like Dramamine and Benadryl and Sudafed to…

View original post 1,205 more words

Affording Prescriptions When You’re Chronically Ill

Living with chronic illness is expensive. Between the monthly premiums, regular office visits, lab work, imaging tests, supplement shots, and prescriptions, it’s no wonder healthcare takes up a large part of our household budget. My daughter and I both need a lot of care. It’s one of the reasons why I take some work that enables me to have “good” healthcare coverage even though it very often makes my symptoms worse. Imagine my irritation then when even my “good” coverage isn’t enough to afford the medications we need.

One symptom of chronic migraine is severe nausea, which often grows more intense whenever the migraine cycle worsens. Recently, I have been too nauseous to swallow my nausea medication. As anyone with chronic, severe nausea knows, this is a problem.

If I can’t swallow the pill, I can’t feel better. If I can’t feel better, I can’t eat, my work productivity suffers, and I find it difficult to contribute fully at home. Even more disturbing, research indicates that persistent nausea is associated with more frequent and more severe migraine attacks.

So, like any good patient, I talked to my doctor. She changed my prescription from a 4 mg Zofran tablet to a 4 mg Zofran disintegrating tablet. This sounded great. A nausea medication I could stick under my tongue that would simply dissolve and start working. No swallowing necessary. Problem solved.

Unfortunately, once I got to the pharmacy, I realized I wasn’t going to be able to solve my problem that easily. My regular generic ondansetron tablets cost around $10 for 30 pills with my insurance. My insurance, however, doesn’t cover the dissolving version at all. Without insurance, the cost was around $650!

I laughed politely and told the pharmacist I wouldn’t be filling the prescription. Then I called my doctor and had her change my prescription back to the regular tablets, which I then filled and have been unable to take for the past few months. Problem not solved (… but more on that to follow.)

The same thing happened recently with another medication. I take an opioid for the severe pain that comes with migraine, but I don’t take it every day. In fact, for many reasons, I won’t take it more than two or three times per week. I also don’t take it on days I experience a panic attack and take a Klonopin, which means I need an alternate pain medication to have on hand (even though the opioid works best and is amazingly inexpensive).

I won’t take acetaminophen and can’t tolerate ibuprofen, so my doctor gave me some samples of Cambia, an NSAID called diclofenac. Generally, NSAIDs aren’t strong enough to treat my migraine attacks unless they come in a rapid-release form, such as an injectable. In such forms, if I take them early enough, they can even serve as an abortive, helping to keep a pending attack from turning full-blown. Since triptans don’t work for me, this is always a major bonus.

Cambia is a dissolving NSAID, and the samples worked well. The medication worked rapidly enough to help abort some attacks and was strong enough to adequately manage moderate (though not severe) pain. All in all, it worked better than many things I’d tried, and so I asked for the prescription.

Once again, I went to the pharmacy with high hopes. Once again, I left empty-handed. The drug cost $620!

I know I’m not alone. All of us living with chronic illness experience this.

Many people living with chronic migraine fervently count and hoard the number of triptans they can afford each month. It’s usually far fewer than the number of migraine days they get, and so they pick and choose which attacks to treat, hoping they pick the most severe ones. This inevitably worsens their disease prognosis, often making the disease more difficult to treat long-term. People with other conditions, like fibromyalgia, go months without their Lyrica or have to discontinue it altogether when they unexpectedly lose their health coverage – even though it may have been one of the only drugs helping to maintain quality of life.

Those of us in the United States pay far higher prices for prescription medications than people almost anywhere else. This makes many prescribed medications out of reach for the majority of us. We want them. Our doctors want us to take them. Yet still we abandon the prescriptions at the pharmacy because we simply can’t afford them. This is absurd.

Not only does prescription abandonment reduce our individual quality of life and often worsen our disease prognosis, it also impacts the economy. Without the drugs that could make our quality of life better, we work slower, we take more sick days, and our economic contributions wither. There has to be a better option.

It turns out there is: Prescription savings cards, such as ScriptSave® WellRx.

The savings card is free to get, can be used for the entire family, and isn’t insurance. The online search engine is easy to use and compares prices with the card across multiple pharmacies in each location. There’s even a mobile app!

When I compared costs, the price for Cambia with the ScriptSave WellRx card was about $100 less expensive with the card than without. Not too great, but not bad either. That’s a full week of groceries! The cost savings with the ondansetron ODT, however, were more substantial. The price went from $650 to around $25!

You can bet I’m going back to my doctor and asking her to rewrite that prescription. This time, I’ll even get it filled. Maybe, I can finally get some relief!

(Disclaimer: I was compensated in return for my honest review of the ScriptSave WellRx savings card. All thoughts and opinions expressed herein are my own, based on my personal experiences, and are not influenced by the company and/or its affiliates in any way.)

Living Well with Migraine and The Unbroken Smile Guest Post

As part of last June’s Migraine and Headache Awareness campaign, I wrote a guest post for The Unbroken Smile on living well with one of the world’s top 10 disabling conditions. If you missed it, you can read it on their blog. While you’re there, make sure to look around! They’ve got some pretty great tips on living with chronic pain.

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!

Migraine is NOT a Headache: A Plea on the Last Day of #MHAM

Migraine is NOT a headache. Really. It’s not.

This is confusing for many of you who do not have migraine disease, I know.

I know that our awareness campaign has the word “headache” in it. I know that many of the groups that focus on migraine, including the American Headache and Migraine Association and the National Headache Foundation, have the word “headache” in their names. I know that many, many people say “My head hurts” when they are experiencing a migraine attack. I am well aware that the scientists researching migraine disease often use the word “headache” in their papers, and that the World Health Organization categories migraine disease as a “headache disorder.”

This does not make migraine disease a headache.

Migraine disease is NOT a headache. 

A severe headache is one of the most common symptoms of migraine disease. It is not the disease itself. Many people living with migraine, myself included, can and do experience migraine attacks that do not include the characteristic head pain. This does not mean we are not having a migraine attack. We are. It does not mean we are not experiencing profound disability. We likely are.

This is possible because migraine is not a headache.

Migraine is a complex neurological disease that affects every system in the body. It affects how we hear, see, smell, think, feel, speak, digest food, and sleep. It can affect our balance, our sense of touch, our mood, our ability to use our limbs, and our energy levels. It changes the way we experience pain. And, yes, it often causes us to feel pain.

But, again, it is not a headache.

Migraine is a disease. A genetic, neurological disease that has no cure and is one of the top 10 most disabling conditions in the world. Calling it a headache reduces understanding and only perpetuates the stigma so often levied against those who live with it on a daily basis.

Migraine is not a headache. So please, if you do nothing else to support those of us with migraine in the coming months, please, please stop calling it that. That’s my final #MHAM plea.

 

 

Finding A Doctor Actually Qualified to Help You #MHAMSMC #MHAM

Over the years, I’ve written multiple articles about my personal struggle to find a doctor who could actually help manage my chronic migraine disease. With Alice-in-Wonderland syndrome, severe vertigo, a plethora of brainstem issues, and the intractable nature of my disease, my case is not an easy one to treat. For that reason, I’ve seen primary care doctors, pain specialists, neurologists, psychiatrists, massage therapists, holistic providers, and some of the best headache specialists in the nation since 2007. I know first hand that who you see, and how much that person knows about migraine disease, makes a huge difference in the variety and efficacy of treatments available to you.

If you’re having difficulty finding a doctor who can actually help treat and manage your disease, you aren’t alone. Thankfully, there are numerous resources available to assist you in finding that person or team. As part of the June 2017 #MHAMSMC, I figured I’d go ahead and share some of those sources here:

Migraine Specialists-3

Also worth reading:

Who Works with Migraine: The Healthcare Providers You Can Turn to For Help

What Is a Headache Specialist? Do I Need One? And How Do I Find One? 

Getting a proper diagnosis and the best treatment available is key to quality of life for those of us living with migraine disease. Hopefully, the above resources will help you find improvement if needed.