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.
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.
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. 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.
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:
- The National Headache Foundation’s Headache Specialist Healthcare Provider Finder
- The American Migraine Foundation’s Provider Finder
- The National Migraine Association’s “Where to Turn for Help” database
- Migraine Research Foundation’s “Doctors Certified in Headache Medicine” database
Also worth reading:
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.
In researching the disability requirements for private insurance policies and the SSA, I realized a lot of things—only one of which is that the actual process of applying for disability is suited more for the abled than the sick.
Applying for disability is a paper-intensive process that involves months, if not years, of work, along with the unnatural ability to convince harassed and harried doctors to spend precious moments advocating on your behalf as well as the uncanny foresight to gather all kinds of documents and “proof” along the way, well before anyone would reasonably expect they’d get sicker instead of better. Basically, it’s an arduous, uphill climb designed to discourage all but the most tenacious from ascension.
But, that isn’t what I realized on the whole.
No, the number one thing I realized while looking into disability benefits was that chronically ill people think of our lives in terms of how sick we are on any given day. How badly we feel. Levels of pain, degrees of nausea, the extent of fatigue.
It’s all very subjective, that kind of thinking, and that’s why so many people fail when they try to obtain benefits. The insurance companies and the SSA don’t give a damn how we feel. They don’t care about how much pain we’re in or how nauseated we are or that we’ve never been so tired in our entire lives. They don’t give a shit.
Nor should they.
That isn’t their job.
Their job is to determine the limitations those symptoms and feelings put upon us. What can we do with that level of pain, fatigue, and nausea? What can’t we? What effects does severe vertigo or pain or any other symptom have on our ability to drive? To dress? To cook or care for our children? To work?
That’s what they care about. That’s what they are tasked with uncovering. And that’s what we need to tell them.
Chekhov once wrote something close to the popular quote, “Don’t tell me the moon is shining; show me the glint of light on broken glass.” Filing for disability is much the same.
If you’re trying to win a disability case, don’t tell them how much pain you’re in. Talk about what that level of pain keeps you from doing. Explain how the extreme pulsing in your head keeps you from talking on the phone or being in a crowded place. Explain how the severe vertigo you experience makes it where you can’t drive safely, stand upright without support, or focus on a computer screen.
Discuss your symptoms but only as a way to explain your limitations. That’s how you define your disability. That is how you win your case.
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.
(Photo courtesy of Migraine Buddy: http://www.migrainebuddy.com/migrainesymptoms-the-stages-of-a-migraine/)
About nine months ago, my psychiatrist put me on the drug Propranolol for anxiety. Propranolol is a beta-blocker drug primarily used to treat high blood pressure, chest pain, and other circulatory disorders. It’s also often used off label for the treatment of anxiety and for migraine prevention. So I figured, why not? If it could treat both my conditions at once, I’d give it a definite try.
But I did have questions:
- Would it work for my migraine disease when the other beta-blockers I’d been given for migraine prevention did absolutely nothing?
- Would it be safe to take when my normal blood pressure is already so low?
The answers, it turned out, were yes and yes, but not really.
The Good News: 10 mg of Propranolol three times a day did more to manage my general anxiety than any other drug I’ve ever tried except Klonopin, Xanax, and Valium, which are truly more effective for my panic attacks than my overall anxiety anyway. It also had a positive impact, albeit it a slight one, on the frequency and severity of the head pain that accompanies my migraine attacks.
The Bad News: If I skipped a dose, I felt it. Almost immediately. And it was not pleasant. Shaky hands, racing heart, queasiness, and a general feeling of something being not right that quickly transformed into a panic attack if I didn’t get that dose quickly.
The Ugly: While it did seem to reduce the symptom of head pain associated with my migraine attacks, after about three months, it increased my migraine-associated vertigo to such a degree I eventually had to stop taking it. (You can read about my level of disability from vertigo in one of my posts for Migraine.com: “Waiting for My Sea Legs: A Story of Vestibular Migraine.”) I tried to hang on to see if that symptom would eventually disappear, but after months of barely being able to walk, I had to say enough was enough. I did try experimenting, with my doctor’s approval, with decreasing my dose and then the dosing frequency, but that only gave me more of the withdrawal symptoms described above.
I imagine that someone with comorbid anxiety and migraine disease who either doesn’t have low blood pressure or doesn’t live with severe vertigo may have a much better experience with this drug than I did. My migraine disease is so complicated, with its crazy auras and brainstem symptoms, that it’s been impossible so far to find a medication that treats one aspect of the disease without worsening another. That may not be the case for others.
I’m curious: Have any of you readers tried Propranolol for migraine or anxiety? What was your experience?