Need for Better Treatment Options By Migraine.com—September 21, 2015

Migraine in America: Data Demonstrate
Migraine patients typically try a variety of treatments across their journey, whether they be prescription medications or alternative therapies. The Migraine In America 2015 online survey gathered insights from 4,502 patients currently diagnosed with migraines in hopes of better understanding their treatment experience, as well as satisfaction and overall medication behaviors. Among the patients who participated in the survey, over half experienced 8 or more migraine attacks each month, and almost half experienced migraine symptoms on 15 or more days a month.

Treatment Experience

Examining the type of treatments currently used by migraine patients, abortive/acute prescription medications were the most common (66%), followed by OTC pain medications (57%), preventive/prophylactic prescription medication (47%) and rescue prescription migraine medications (39%). Among those treatments tried and abandoned, complementary and alternative therapies had the highest abandonment rate (42%), followed by OTC pain medications (36%) and preventive/prophylactic prescription medication (35%).

Looking at usage among the lesser common migraine treatments, 40% of patients have used antiemetics throughout their journey, however less than 10% were currently relying on them for relief. Nerve blockers or pain blocking treated were once tried and abandoned by 18% and continued to be used by only 7%. Eight percent of patients surveyed have tried the Cefaly® device, however half of these patients have ceased its usage.

Preventive Treatments

Among preventive migraine medications, antiepileptic drugs were currently used by 31% of patients, and antidepressants by over 26%. While over half of current antidepressant users having suffered from depression and/or anxiety, so usage may also be to treat these conditions and not migraine exclusively, they still had a 53% abandonment rate.

Despite having the highest abandonment rate among preventive treatments (59%), antiepileptic drugs had the highest level of satisfaction among current preventive users (51%). Similarly, oral steroids were among those with higher levels of satisfaction for preventives (48%), but also a higher level of abandonment (45%, with only 4% still using). Following antiepileptic drugs, beta-blockers had the second highest abandonment rate (54%, with 15% still using).

Among lesser common preventive treatments, Botox® for Chronic Migraine was currently used by 18% of patients surveyed, however had been abandoned by 16%. Calcium-channel blockers have been abandoned by 35% of preventive users, with only 7% reporting usage at the time of the survey. And in the bottom among current preventive users, serotonergic agents were only currently employed by 1% of patients, and 11% have tried and abandoned.

Despite all the available options, it’s important to remember that few of these options were developed specifically for the treatment of migraine. Therefore it’s not surprising that the overall satisfaction level, with even the most commonly used migraine treatments, remains at only about half of users.

Abortive or Rescue Treatments

Among abortive/rescue medication users, triptans were currently used by over half (55%) and anti-nausea medications by 39% (abandoned by 34%). Among those abortive / rescue medications with high abandonment rates, prescription NSAIDs were the leader (50%, with 29% still using), followed by prescription analgesics (45%, with 45% still using) and then triptans (38%).

Ergot derivatives had a very low current usage rate (6%), and over a third of abortive/rescue users have tried and abandoned (35%). Despite having a 36% abandonment rate, 1 in 4 abortive/rescue users still turn to prescription muscle relaxants.

Three out of 4 of patients who use abortive/rescue medication cited they would initiate treatment within an hour of suspecting they were getting a migraine (37% immediately and 38% within 1 hour), only 8% waited over 2 hours. Of those who usually waited more than 2 hours, they typically didn’t want to overuse medication (62%) or waste it (57%), as well as ensure that they really were getting a migraine (54%).

Over 2.5K patients (more than half of those surveyed) had used a triptan within the past 3 months. About 1 in 4 had used 2 or more forms of triptans within the previous 3 months

88% – Tablets
17% – Injection/Needless injection
15% – Fast melts
8% – Nasal Spray
Within the branded triptan medications, Imitrex had the highest usage rate within the previous 3 months among tablets (30%), among nasal sprays (3%) and among the injections surveyed (9%). Among current triptan users, most had been using their current medication for over a year – with Imitrex tablets having the highest proportion of long term users (86% having had used over a year).

Overall, triptan users were satisfied with the efficacy and tolerability of the medications they had used in the previous 3 months, with at least half of patients reporting being satisfied or very satisfied. However, it is not surprising that 35% of abortive or rescue medication users indicated they would consider switching medications if their current stopped working for them and 28% had thought about it sometimes. Very few have ever thought about it (4%) or have considered adding something to their current treatment plan (4%).

CAMs and Self-Medicators

Self-medication was currently being used by a small proportion of patients surveyed (11%). Marijuana was by far the most commonly used among current self-medicators (59%) and illicit drugs the least (5%). Whereas 71% of patients had tried or were currently using complementary and alternative therapies for their migraines; 29% were still currently using at the time of the survey.

Among current therapy users, sleep/rest (37%) and dark rooms (35%) were prominently employed, as well as being consistently utilized by at least half of their users. Additionally, diet (30%), hot/cold therapy (29%), massage (26%) and caffeine (26%) were therapies patients currently turned to. While these therapies were common, those alternative therapies that patients were apt to consistently leverage for preventive purposes were dietary supplements, such as magnesium, riboflavin, butterbur, CoQ10, and feverfew.

While a variety of alternative therapies have been used in attempt to reduce or stop migraine symptoms, many patients have not persisted with those they have tried. Chiropractic care, caffeine use, and acupuncture were the most discontinued therapies, having been tried in the past but no longer used (56%, 47% and 43% respectively).

Medication Behaviors and Viewpoints

Although a majority of patients had insurance, nearly half of patients spent more than $500 last year on migraine related treatment and therapies (46%). Another 19% spent between $251 and $500 to cover their migraine related care.

Patients typically filled their migraine medication prescriptions at a chain pharmacy (46%). Over a third of patients (35%) reported typically waiting at the pharmacy for their migraine medication fill, and half usually would drop-off and return within 24 hours.

At some point in their treatment journey, three quarters of patients had withheld taking a medication to spare it for another time. Side effects also played a role in medication avoidance for over half of patients; 72% of those surveyed have stopped a medication and 73% have avoided a medication at some point due to side effects.

Patients were asked to rate their agreement with statements on a 7-point scale (7 = Completely agree), to better understand their treatment viewpoints. Average ratings with each statement are shown below, illustrating migraine patients’ determination to find a treatment that is effective for them:

5 – I have tried everything possible to manage my migraine symptoms
5 – I actively seek out information about the latest migraine medications
4 – I would rather make changes to my lifestyle and or diet than take medication for my migraines
4 – I try to avoid migraine medication as much as possible
Overall, 17% of patients surveyed were aware of new migraine treatments that have been recently approved or are going to be available soon. Zecuity® had the highest awareness level (33%) and moderate level of likelihood to try (52%, Top 2 box on a 5-point likelihood rating scale); whereas CGRP had the highest likelihood to try rating (73%), but a lower awareness rating (17%).

Although there are a great number of treatments for migraine available between those that are preventative, abortive, and rescue medications, most patients have tried several of these treatments, indicating that their migraines are not well managed. Data from this survey further support the need for new, more efficacious treatments for migraines than are currently available.wpid-wp-1432820251735.jpeg

Communicating with your doctor By Tammy Rome—October 5, 2015

My son went through a phase of shutting down conversation whenever he heard something he didn’t like. I had to explain many times that this was not an effective way to get what he wanted. We spent a lot of time working on the difference between a conversation “starter” and a “shut down.” He had difficulty communicating effectively and spent a lot of time feeling frustrated and misunderstood. Over time his communication skills improved. He learned how to negotiate by using “conversation openers.”

Guilty
Like you, I’ve spent a lot of time in doctor’s offices. Much of that time was wasted, partly because I did not know how to communicate effectively with the doctor. If I had known what to say and how to say it, there might have been better outcomes. I needed the very same skills that I worked so hard to teach my son.

I made a lot of mistakes. You’ve probably made some of them, too. Mistakes are okay, as long as we learn from them. I’m not suggesting that all of our troubles with doctors is our fault. We can only control our own speech and behavior. What the doctor does in response is not our responsibility. And yes, there are some doctors who will not respond well no matter how we behave. Sometimes you do have to walk away.

Shut down versus Starter
Here are a few examples of conversation stoppers and their more productive alternatives:

Shutdown Starter
“I’m a hopeless case.” “I’ve tried a lot of different treatments that haven’t worked.”
“Nobody can help me.” “I’ve seen a lot of doctors without success.”
“You’re my last hope.” “I’m tired and feeling desperate. I need to know you won’t give
up on me.”
So what do you think?
Here are some common situations and a few alternatives. Think about how you usually respond. Does your response open the door for ongoing conversation or does it shut down the conversation? Do you need to change the way you talk to your doctor?

Your doctor writes a prescription, but you’re worried about the side effects. What should you do?
Take the script, then toss it in the trash when you get home
Take the script, then get online and ask your friends what they think.
Tell your doctor you have misgivings about the medicine and ask if there are alternatives.
Your doctor is pleased with your progress, but you want better results.
Go along with your doctor. After all, he/she knows best.
Tell your doctor you’d like to make more progress and ask if there is something more that can be done
You’d like to try a certain treatment, but your doctor hasn’t suggested it.
Accept the treatment you’re offered. If the doctor thought it was worth trying, he/she would suggest it.
Ask your doctor what he/she thinks of the treatment and if you’re a good candidate.
You’ve been fighting the same migraine for days without relief.
Continue to suffer in silence, hoping it will pass on its own.
Go to the ER for some relief
Call your doctor to see what he/she suggests.
You’ve been seeing the same doctor for months without success.
Quietly search for a new doctor and leave without saying anything.
Write an angry letter blaming the doctor for your lack of progress.
At the next appointment, explain your frustration about the lack of progress. Tell him/her that you are considering getting a second opinion.
Your doctor is not a headache specialist. You want to see if a specialist can help.
Make an appointment with the specialist without talking to your doctor.
At the next appointment, tell your doctor you would like to see a specialist. Ask for copies of your records.
You’ve just been to the ER where you were screened for status migrainosus and treated for intractable migraine. Now what do you do?
Crawl in bed to sleep it off. Once you feel better, work hard to catch up.
Call your doctor to let him know what happened. Ask if you need to be seen.
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I’m not going to tell you there’s a right answer. That’s for you to decide. After all, it’s your health so you get to be in charge.

Tammy’s first experience with Migraine started in 1975. Currently disabled by multiple pain conditions, Tammy still uses her expertise to help others. She holds a Master’s degree in Professional Counseling and is a skilled Herbalist and Reiki Master. She shares her extensive experience in both conventional and complementary medicine here at Migraine.com and on her own blog, Brain Storm.

Don't you cry no more!
Don’t you cry no more!

When Should You Go to the ER with a Migraine?

migraineagain.com/when-should-you-go-to-the-er-with-a-migraine/

You’ve been suffering through a migraine that just won’t stop. Or you start experiencing some scary symptoms, like numbness, tingling, visual aura or passing out. Or you get a shockingly sharp and sudden pain unlike any migraine before. These are among the reasons migraine sufferers go to the ER (Emergency Room in the US) or A&E (Accident & Emergency in the UK), often despite bad experiences in the past.

For many, the going to the ER with a migraine is a last resort.

As one patient, Cheryl Stoutenberg Robinson, shared on our Facebook page: “The last time I went, I thought I was having a stroke. I waited for hours. They put me in a dark room, and when the doc finally saw me… I knew it was a hemiplegic migraine and the doc gave me an aspirin and wanted to give me IV fluids, but since I had been there for sooooo long, I just wanted to go home to my own bed with the knowledge that I wasn’t having a stroke. Our ER does not give narcotics or use triptans. The only thing they will do is give you chlorpromazine by IV and make you stay for hours.”

To understand what really happens in the ER, check out Part 1 in our 3 part series on Migraine Emergencies here. It may be an absolutely necessary evil for you.

When You Should Go to the ER with a Migraine

According to the Agency for Healthcare Research and Quality, it’s essential to rule out stroke or another life-threatening cause of intense headaches — which ER doctors are equipped to do better than anyone else, even your own physician. The symptoms can mimic a migraine, and even for frequent sufferers, it can be difficult to tell the difference. You should go to the hospital right away if:

You have an extremely severe headache (it could be a migraine, or it could be something more serious)
You have speech, vision, movement, or balance problems that are new or different from symptoms you have had before with your migraines
You have a stiff neck or fever with your headache
The headache starts suddenly, like a “thunderclap,” especially if you are over age 50
Acute Treatment Protocol for Emergency Rooms

Yet by reading our readers’ personal stories, it’s clear that all ERs are not created equal, and don’t even follow the same migraine treatment protocol. A 2012 report by two leading neurologists, Dr. Amy Gelfand an Dr. Peter Goadsby, gives hospital physicians a protocol and recommended medications for the best-in-class treatment of migraine in the ER. They recommend:

Diagnosis: Reassurance, assuming one is confident of the diagnosis, that this is migraine and can be controlled;
Hydration: ensure adequate hydration;
Control: first control headache; and then control associated features, particularly nausea, while also considering photophobia and phonophobia through treatment in an appropriate environment. (Read: dark, quiet space).
If you’re wondering what in the world you’re being given to control your migraine in the ER, you may want to print out this list of Drugs Used in Emergency Room Management of Migraine. It does not include all the options for nausea (like Phenergan). And these are not universally used; just recommended by migraine doctors.

5 Alternatives to Using the ER for Migraine Care

Given all the unpleasant and dramatic stories about ER treatment, you may be wondering: what’s the alternative? If it’s a scary migraine with new complications, the ER is your safest bet. If it’s an intractable migraine that won’t respond to treatment at home, you have a few options.

1 – Change Your Approach: There are literally dozens of migraine treatments in our website here, from prescription to over-the-counter to home remedies that have good evidence behind them, and work for many. Ask for help to comb through them, and see if there’s one you can try instead of your usual treatment that’s failing. You may need to request a prescription or make a trip to the store, but it’s better than 5-6 hours in the ER.

2 – Talk to a Doctor Online: Using a telemedicine platform like HealthTap from anywhere in the world, you can reach one of thousands of qualified US doctors via an app on your smart phone 24/7 for far less money than a traditional co-pay. They can call in prescriptions too. Rates vary, but can run $20-44 per consult.

3 – Ice Up and Wait: Hydrate heavily, administer ice frequently with a better ice pack (see our picks here), and try to sleep (using Benadryl, magnesium or melatonin if necessary) until your doctor’s office opens up. Says Larisa Gokool: “If the choice is between having a three-day plus migraine where nothing is helping and I’m crying because I’ve been in pain for so long in my quiet house (with tinted windows covered with black out curtains) with my quiet dog and quiet husband who take care of me or a brightly lit, bright white-walled, smelly, loud expensive hospital ER, I’ll wait it out under my blankets where I can at least control my surroundings.”

4 – Go to Urgent Care: They’re close by, service oriented, and you won’t be understandably waiting behind a broken leg. It’s typically much less expensive too. Many are pleased with the care they get there: “I’ll go to Urgent Care (which is like a doctor’s office that you don’t have to make an appointment for, basically) but not the ER” says Anna Kane. “I’ll only go to Urgent Care when I’m starting to lose vision and get that “flutter” over one eye, though. A shot of Imitrex, a shot of Zofran, and they will even dim the lights and let me lay back for a bit while it kicks in if they’re not super busy. One time, one of the women at the desk even came in to the waiting room to turn off the TV while I was waiting. They are really good when it comes to migraines.”

5 – Request Home Rescue Medications from Your Doctor: While this isn’t available 24/7, you can ask your MD to show you how to administer some of the same meds they’d give you at the hospital. “I found that all they do is give you a shot of toradol or some other narcotic, nauseous medicine, and benadryl they say that it makes you sleep” said Skipper Davis. “So my doctor set me up with the shots that I do at home and the pills for nausea but I don’t take the benadryl. The nausea pill usually puts me down.” That might be the injectable forms of Toradol or DHE-45 and Phenergan, available by prescription. For sufferers like Teresa Powell, this has been a life-changing option to deal with intractable cluster migraines.

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When Medical Professionals Say ‘You Look Too Healthy to Be This Sick’ Kate Sytsma Oct 03, 2015

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It’s something chronically ill people likely hear all the time from medical professionals. I truly believe it’s meant to be a well-meaning gesture, but unfortunately it often falls short of that. They have our charts in hand. They see the long list of diagnoses, medications, allergies, hospitalizations, surgeries, etc. Then they look at us and mutter the words we know are coming, the words we wish we could prevent: “You look too healthy to be this sick.” It’s a gut-punch, and this is why:

Chances are it has taken us an immense amount of energy and struggle to get to that medical appointment. There are medications to be taken, tube feeds to be prepared, wheelchairs to lift and load, emergency medication bags to pack. There is energy spent waiting in the waiting room, which is often uncomfortable for someone who is chronically ill. When those words are muttered, in just a split second it discredits all of the time and energy a person with chronic disease has put into just getting there. By the time we get through all we did to get there, our symptoms are probably aggravated. We certainly aren’t feeling healthy, even if we so happen to be looking it!

It downplays what those of us with chronic illness experience on a daily basis. For most, it takes energy just to get out of bed in the morning. It takes willpower to get into the shower and get dressed. All those things on our medical charts have severely affected us at one point or still do today.

It discredits the physical and emotional pain that those of us with chronic illness experience. A medical chart is just filled with words, but those words amount to some of the worst memories of our lives. Those hospital stays listed are more than just a grouping of days marked on sheet of paper paired with an admitting diagnosis. They are days spent away from loved ones. They are the days spent in pain, lying in a bed alone wondering when we’ll get to go home, if we will get to go home and just how long we’ll get to stay there.

It makes us think you aren’t truly seeing us or taking us seriously. That is quite frightening for a patient with multiple health needs. It’s especially anxiety-provoking when you’re in the ER. If the medical professionals caring for you think you simply look too well to be as sick as you are, we know that could change the way you’re treated. It could mean pertinent labs are not drawn, necessary imaging is not performed, fluids and medications are withdrawn — all because they think you look too well to be carrying the primary and secondary diagnosis you have, and that you don’t have a high need for being seen. Being told you look healthy is no compliment in the ER; it’s an instant dose of anxiety. Especially when you’re feeling terrible and have been waiting five hours to be seen.

It minimizes what our loved ones deal with on a daily basis. By saying we look too healthy to be sick, you’re taking away from our loved ones who care for us on a daily basis. I’m sure our husbands, mothers, friends, children, nurses and other caregivers don’t agree — as they adjust their lives, alter their work schedules and carry the weight of our worlds on their shoulders — that we look super healthy. In fact, I can’t think of a single person in my life in the past six months who said to me, “You look healthy” other than some slightly condescending medical professionals. There’s probably a reason for that.

It probably is truly meant to compliment you, but the fact of the matter is there’s no reason for a medical professional to comment on your appearance period, unless it is actually an effect of a diagnosis (such as a rash, jaundice, tumorous growth, etc.). Such a comment isn’t helpful at all to a patient’s care plan, and it really can cause anxiety and despair.

If I had a solution I would offer one, but in all honesty, I think it would be best if those in charge of caring for individuals with chronic illness spent less time commenting on their looks, and more time coming up with a patient-centered treatment plan to help them succeed in staying comforted and stable.

Follow this journey on Learning to Let Go; A Different Dream for Us.

We face disabilities and diseases together. Join us on The Mighty.

migraineagain.com/what-is-this-strange-feeling-after-the-migraine-stops/

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Editor’s Note: It’s not over until you say it is. Meaning, there’s a pretty common phase of migraine that few people talk about because it faces even more skepticism than the migraine itself. It’s the postdrome, that migraine hangover after the intense pain phase has abated. This piece by Scicurious published in The Guardian addresses it head-on, brain fog and all.

After the Migraine Stops, it’s Time for the Postdrome Phase

Last week I had a migraine. To some that won’t mean much, but fellow sufferers will know that it means hours, or even days, of nausea, light sensitivity, sound sensitivity, and crushing, pulsing pain. The kind of pain that makes you think (in the moments when you can think at all) that self- trepanation with the rusty drill from the understairs cupboard might be a viable option. Eventually – minutes, hours, or days, later – the pain subsides. For me the days following a migraine are filled with a mixture of relief and mental exhaustion. My head is sore and my brain is tired.

It feels kind of like a mental hangover – like being drugged. Sometimes the migraine lasts for days and when it finishes I want to make up for lost time. I want to function. And somehow somehow I just can’t. For a day or more after a severe migraine, I feel like I’m working through a mental fog, one so heavy that even routine tasks take on an otherworldly quality.

What is this feeling AFTER the pain? I knew I would face skepticism at best and outright disbelief at worst when I talked to people about it. And I even began to doubt myself. Maybe I was just tired? Finally I decided to look for a study. Is this real, or am I just imagining things?

It turns out that what I experience is called the migraine postdrome. Migraine can occur in four possible stages, and each patient may experience one, some, or all of them.

7 Subtle Migraine Symptoms Warn an Attack is Coming

First is the prodrome, the period before the migraine, consists of a variety of possible symptoms which seem to have very little in common: irritability, depression, yawning, gastrointestinal disturbance, food cravings, stiff muscles, even hot ears. Not all patients get this, but it occurs hours to days before an attack, and is often the only warning they get.

The second phase is the Aura. This phase can come immediately before or during the actual migraine pain phase, and can consist of visual disturbance (many people talk about blind spots or zigzags), or of other changes in perception, such as a pins and needles feeling.

And then there’s the third phase. The pain phase. This can last from 4-72 hours andincludes pain (usually, but not always localised to one side of the head), nausea, vomiting, and intense sensitivity to light or sound.

Finally, after the pain, the postdrome. The symptoms here are less dramatic than the pain, the auras, and the vomiting, but can still impair quality of life.Instead of pain or nausea there is fatigue, difficulty concentrating, dizziness, weakness, and decreased energy. They don’t sound like much, but patients report a decreased ability to work, decreased interactions with family and friends, and what is often most frustrating, a feeling of cognitive impairment. These feelings can be maddening and depressing. When you’re supposed to be feeling better, you end up almost feeling worse.

How to Know If You Have Migraine with Aura

Not only are the symptoms themselves exasperating, the postdrome itself is a relatively new and unexamined phenomenon. While reports of and treatments for migraine go back millennia, studies of migraine postdrome itself go back only to 2004. Patients generally complain of similar symptoms. But the causes of migraine postdrome, like the migraines themselves, remain a mystery.

No one knows what causes migraine. It’s a strange pile of symptoms: auras, light sensitivity, gastrointestinal disturbance, pain, exhaustion. Some people may exhibit all symptoms, some almost none. Some feel repetitive pulsing pain, some feel crushing pain, and some have light sensitivity, auras, and vomiting, without any pain at all. Some people have clear triggers, such as food or smells, that can bring on a migraine. But a food or a smell isn’t a direct cause. It’s only a trigger. Many have a postdrome, but some do not.

There are many hypotheses. People who experience aura before migraines show a spreading depression of cortical activity in the brain. But then, there are many migraineurs who don’t experience aura at all. Some hypothesize that dilation of the blood vessels in the scalp produces the throbbing pain that goes with each heartbeat. But some migraneurs don’t even experience pain, and some experience pain that does not throb. Many drugs that are used to treat migraine act on the neurochemical serotonin, a chemical which plays a role in mood as well as pain, and which can also control the dilation of blood vessels. But there are many migraineurs who don’t respond to these drugs. Some scientists think that there is an underlying brain dysfunction. But there is no evidence.

All these hypotheses were in place before the acknowledgement of a “postdrome”. Though the idea of a postdrome may be a relief for patients, to have their experience acknowledged as reality, it can seem to complicate the migraine issue. Yet another weird symptom to add to the pile. Another aspect of migraine that the final cause must encompass and explain. Maybe it’s better to focus on the “bigger” aspects, the pain and the auras, and let the postdrome go, until we have a good working theory.

How to Read Your Migraine Symptoms More Effectively

There are several reasons that the migraine postdrome has remained unstudied and ignored. First of all, there’s no pain. The seriously debilitating symptoms of migraines are the pain, the light sensitivity, the auras. Compared to these, a little mental fog in the few days after seems like the least of our concerns. Secondly, what is the point in studying the postdrome? These cognitive symptoms and decreased energy may be debilitating, but they only complicate the issue of what may be causing the main symptoms. Finally, what if it doesn’t exist? A significant number of patients report the symptoms, but so far, there are no biological indications.

Not every migraine sufferer experiences postdrome, but I’m certainly not alone. While my feelings of cognitive impairment may not sound like much, they can be intensely frustating, undermining my confidence and affecting my daily performance. And there is another good reason to study the postdrome: while my feelings of “mental hangover” are one more symptom of the inscrutable condition of migraine, it’s possible that no one symptom is going to reveal the underlying causes. Migraine is not one thing, it’s a collection of symptoms, and we need to consider that whole collection when coming to a hypothesis of what it’s about. Maybe no single piece will solve the puzzle, but by fitting together a group of symptoms, we may see a clear picture of migraine.

The Spoon Theory by Christine Miserandino

http://www.butyoudontlooksick.com
My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
Cartoon image of Christine Miserandino holding a spoon
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.
© Christine Miserandino

The Storm Inside

The storm rages on. Fierce, wild, wicked, dangerous. Dark, shadowed, black, endless. Unforgiving, destructive, deadly, demonic. Strong, so strong in its fury. Relentless in its wrath. Tearing down what once was stable. Turning it into mere rubble. In seconds, doing more damage than ever thought possible. Unstoppable until it’s ready to move on. No amount of pleading, begging, crying, screaming will make it abate faster. It’s here for as long as it chooses. Maybe forever. Leaving me torn apart and broken in its path. The storm is in my head. This is depression and anxiety. This is my life.

Depression, Anxiety, and Panic Disorder
Depression, Anxiety, and Panic Disorder

Patient-reported outcomes from the 2015 Migraine in America Survey By Migraine.com—September 9, 2015 The Migraine In America 2015 onlin

Patient-reported outcomes from the 2015 Migraine in America Survey
By Migraine.com—September 9, 2015
Thewpid-wp-1432820181903.jpeg Migraine In America 2015 online survey gathered insights from 4,502 patients currently diagnosed with migraines in hopes of better understanding their symptoms, treatment experience and life impact. Those surveyed came from across the U.S. They were primarily female and over the age of 40, as well as being married with children. The 2015 survey continued to illustrate the challenges and impact of migraine among patients, building upon findings from previous Migraine in America surveys.

Diagnosis

Migraine has been a long-standing challenge for these patients; most have been experiencing migraine symptoms for at least half of their lives. A total of 59% started experiencing migraine related symptoms before reaching adulthood and ¼ had identified a specific incident that coincided with the start of their migraines. Over half of patients surveyed experienced initial migraine symptoms of head pain, as well as sensitivity to light and/or sound.

Almost half of patients went at least 5 years between initial symptoms and diagnosis. It was typically the patient’s PCP/family physician making the initial diagnosis, with very few having been diagnosed by a headache specialist. While 65% had been diagnosed with chronic migraine (the most prominent classification reported in the survey), only 62% of patients surveyed fit the classification based on their migraine frequency.

Symptoms

Migraine is more than headache pain – patients experienced a myriad of migraine symptoms (on average, about 16 different symptoms). While symptoms varied somewhat across migraine attacks for many patients, most typically included head pain, sensitivity to light and sound, as well as difficulty concentrating and sensitivity to smell. Over half of patients experienced 8 or more migraine attacks each month, and almost half experienced migraine symptoms on 15 or more days a month.

Almost all patients had identified triggers for their migraine attacks, particularly the environment, stress and light; 77% had taken special steps to avoid these triggers. Additionally, almost half reported they are more apt to experience the first signs of a migraine attack at a certain time of day, and about a 1/3 noted that they experience more symptoms during a migraine attack at a certain time of day.

Nearly all patients surveyed reported suffering from other health conditions, typically allergies, anxiety and depression were the leading comorbidities. A total of 1 in 3 patients suffered from both depression and anxiety.

HCP Engagement

Nearly all patients were currently under the care of a physician (specifically for migraine). Over half were satisfied with that relationship and ¾ were comfortable talking with their healthcare professional about their migraine symptoms. PCPs / family physicians and neurologists were the predominant healthcare professionals patients had seen for their migraines. Interesting that less than half of patients have seen a headache specialist at some point over their journey.

Less than half of those surveyed have visited an ER or an urgent care facility in the past year for their migraines. Among the few who were not currently seeing a healthcare professional specifically for their migraines, the prominent reasons included being able to manage on their own and having given up on doctors.

Treatment Experience

While patients reported feeling as if they had tried everything to manage their migraines – with prescription medications, OTC drugs, complementary and alternative therapies – they continued to seek out new approaches to treat and prevent migraines, and are willing to keep trying new options.

Abortive / acute prescription migraine medications and OTC pain medications were used by over half of patients, with preventive prescription migraine medications and rescue prescription migraine medications also commonly used. Among those treatments tried and abandoned, complementary and alternative therapies had the highest abandonment rate, followed by OTC pain medications and preventive/prophylactic prescription medication. Among preventive migraine medications, antiepileptic drugs were currently used about 1/3 of patients and antidepressants by about ¼.

Amid abortive / rescue medication users, triptans were currently used by over half and anti-nausea medications by almost 40%. Over 2.5K respondents had used a triptan within the past 3 months and ¼ had used 2 or more forms. Three out of 4 of patients who use abortive/rescue medication cited they would initiate treatment within an hour of suspecting they were getting a migraine. Over ¾ had withheld taking a medication to spare it for another time.

Self-medication was currently being used by about 1 in 10 patients surveyed, whereas 1 in 4 patients were currently using complementary and alternative therapies for their migraines. Among current therapy users, sleep/rest and dark rooms were prominently employed, however dietary supplements were used most frequently and consistently by their users.

Migraine Impact

Migraine was most often described as “debilitating” and impacted all areas of patients’ lives – work, career, family relationships, social activities and self-esteem. Depression and anxiety were common among patients surveyed. While almost 60% of those surveyed were still employed in some capacity, a majority of those surveyed were classified as “severe disability” on the MIDAS scorecard.

Despite feeling they had tried all options to manage their migraines, patients continued to seek out the latest migraine treatments – 17% were aware of new migraine treatments that may be coming out soon. Patients also turned to migraine specific websites or their healthcare professional as a resource to learn about or manage the disease.

Summary

Data from the 2015 Migraine in America survey illustrate that migraine continues to have a profound impact on patients’ lives. While the majority of survey participants reported that they take both preventative and abortive medications, more than half still experience 15 or more headache days per month. Unfortunately, patients with migraine continue to face challenges in meeting their healthcare needs, such as lack of access to headache specialists, treatments that lack efficacy, and the stigma associated with living with an invisible illness.

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Severe Fibromyalgia

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Severe fibromyalgia affects people with higher body mass index to a disproportionate degree, indicating that weight contributes to the severity of symptoms. Multidisciplinary treatment that combines medical and complementary features is the only effective treatment for severe fibromyalgia.

Severe fibromyalgia can have tremendous impact on quality of life. An August 2011 study published in the journal Health and Quality of Life Outcomes looked at 203 patients with varying levels of fibromyalgia pain, sleep disturbance, depression, and anxiety using a total of five different questionnaires. The study found that 66% of patients could be classified as suffering from moderate to severe fibromyalgia and that the severity of symptoms was directly related to quality of life in terms of productivity, happiness, and general self-esteem. People with moderate to severe fibromyalgia missed an average of 1.8 work days per month, which is roughly three times the average for the general population. Fifty percent of patients in the study reported disruption to their employment as a result of their disease.

Weight and Severe Fibromyalgia

While the cause of fibromyalgia is unknown, there are certain risk facts that seem to have an impact on the severity of symptoms. One of the most important is weight. In a 2011 study in the journal Arthritis Care & Research, doctors at the Mayo Clinic found that an increased BMI led to more severe fibromyalgia in terms of symptoms and quality of life.

What is very interesting about the study is that of the 888 patients involved, the BMIs were almost evenly distributed between normal, overweight, obese, and severely obese, suggesting that weight does not cause fibromyalgia. However, the difference in the severity of symptoms across weight groups was statistically significant and suggested that even if weight does not cause fibromyalgia, it certainly contributes to the severity of the symptoms in people who have the disorder. Patients with greater BMIs complained of more physical dysfunction, more lost days of work, more pain, more stiffness, and greater levels of depression.

The results in relationship to weight suggest that exercise may have multiple mechanisms of positive impact in fibromyalgia. It is well know that exercise, even without weight loss, is associated with a decrease in the symptoms of fibromyalgia. It appears that an added benefit of exercise may be that weight loss can decrease symptoms and reduce the severity of fibromyalgia.

Sleep and Severe Fibromyalgia

According to the Mayo Clinic, people with fibromyalgia sleep roughly one third less time than the average individual, a value that increases to almost one half in patients with severe fibromyalgia. In a 2011 study in the Journal of Sleep Research, a correlation between quality and duration of sleep was made with symptom severity. Interestingly, the study also made a correlation between symptom severity and physical activity.

Fibromyalgia is a vicious cycle because flares of pain are generally accompanied by fatigue, both of which reduce an individual’s motivation to exercise. Through no fault of their own, these individuals end up stuck in bed or milling about the house as they try to find relief from their pain. Unfortunately, this all-too-understandable reduction in activity only serves to worsen the symptoms of fibromyalgia. One of the best ways to avoid this vicious downward spiral is to find a fibromyalgia support group. The bond between members can help motivate individuals to keep pushing forward through the tough times and can help to minimize the potential for closing off one’s self at home as pain intensifies. Studies show that symptom severity is dramatically decreased in patients that are active in support groups.

Age and Fibromyalgia Severity

A study in Nursing Research in September of 2011 found an interesting correlation between severity of fibromyalgia and age. Middle aged adults are more likely to have severe fibromyalgia than are older adults. It seems that symptoms are worse at onset of the disease and slowly but consistently decrease over time. The study looked at 533 adults over the age of 50 with fibromyalgia. The group closest to 50 years of age reported more symptoms and more functional limitations as a result of the disease than did older individuals. The reason for this association is not clear.

Treatment in Severe Fibromyalgia

The mainstays of therapy in fibromyalgia are important regardless of severity. Patients need to be aware of sleep, eating, and exercise patterns, take prescriptions medications on a regular basis, and remain active as part of a well-rounded treatment regimen. What is interesting, however, is that the more severe fibromyalgia is, the greater the necessity for a multidisciplinary approach. In other words, those who suffer from mild symptoms can get away with only engaging in a few of the treatment options. For those who suffer from severe fibromyalgia, however, a treatment program must include multiple aspects if it is to succeed.

A July 2011 study conducted in Spain found that patients with severe fibromyalgia required medical treatment, massage, exercise, and thermal therapy to achieve relief in terms of pain, social function, and overall health. While this was only a pilot study, it seems to suggest that severe fibromyalgia is best treated with a combination approach and that medication alone is not enough.

The severity of fibromyalgia is tightly linked to weight, age, and activity level. While no one can control how fast she ages, weight and activity are well within the control of the individual. As both are related to exercise, the tie to severity between these further supports the notion that exercise is one of the most important aspects of any fibromyalgia treatment regimen. Severe fibromyalgia is a major personal and societal burden that deserves more attention in research.

What Every Migraine Sufferer Should Know to Stop Chronic Migraines Down the Road by MigraineAgain.com

wpid-wp-1432820251735.jpeg“This is my struggle! I just pray everyday and hope someday I’ll be healed!” said Michelle Frazier in response to Tracy H.’s Migraine Journey published on Migraine Again. If only we knew what the future holds. We all want to know when this migraine pain is going to stop — and if it ever will.

Will it get better? Will it get worse? Will my vacation, birthday or wedding day be a migraine disaster? Will I be able to enjoy chocolate or wine or bright sunshine again? Is there any way I can stop chronic migraines in the future? That’s what we want to know. Yet doctors can’t give you a definitive answer, because migraine attacks are generally unpredictable. A new study is finding what increases your risk of progressing from episodic to often disabling chronic migraine – something every migraine sufferer should know.

Common Migraine Life Cycle
According to The Migraine Research Foundation, migraine is most common during the peak productive years, between the ages of 25 and 55. While 1 in 10 school age kids have migraine, The Migraine Trust reports that most people have their first attack during their teens or early twenties. It is rare for migraine to start later in life. Typically, migraine becomes less severe and frequent, and may even disappear, by around the age of 50. For some women this is associated with their menopause, for others it may be retirement or reduced stress.

How Migraines Progress Over Time

According to a 12-year retrospective study on how migraines progress over time, 3 of 10 of migraine patients who had been getting 1 to 6 attacks per month reported their attacks had stopped.  That’s great news!  For a third of us, migraines may be temporary.

The researchers, led by Dr. Carl Dahlof of the Gothenburg Migraine Clinic in Sweden, found that of the remaining patients who continued to experience the headaches 12 years later, most had fewer, briefer, and milder attacks.  That’s also good news.

  • Fewer Attacks for most:  80% reported a change in attack frequency, with 80% of them having fewer migraines and

    Depending on your age and how you treat it, migraine can get worse – or much better. (Source: Stewart et al 1994)

    20% having more.

  • Shorter attacks for most: 55% reported a change in duration of attack, with 66% of them saying their attacks lasted shorter periods of time and 34% saying they lasted longer.
  • Less intense pain for most: 66% said the pain intensity changed, with 83% of them experiencing milder pain and 17% experiencing more severe pain.

Now, the bad news:  a small percentage progressed to the more disabling form known as chronic migraine, defined as having migraines more than 15 days a month.  The American Migraine Prevalence and Prevention Study (AMPPS) found that 2.5% of the US population suffers from chronic migraine – including many of us. Another study is underway, the Chronic Migraine Epidemiology and Outcome Study (CAMEO), to follow 12,000 chronic migraine sufferers and discover the factors that increase the likelihood of episodic migraines turning chronic.

What You Can Do Now to Stop Chronic Migraines in the Future

According to Dr. Richard B. Lipton, director of the Montefiore Medical Center Headache Center and professor of neurology at the Albert Einstein College of Medicine, in New York City, the CAMEO study revealed “not surprisingly, among people with episodic migraine, the worse you are, the more likely you are to continue to progress. So high frequency and high disability are important predictors of progression.”

Dr. Lipton told Migraine Again that there are several risk factors patients should be aware of that increase likelihood that episodic migraines will turn chronic and disabling.  These include:

  • Comorbid conditions, including depressionanxiety, asthma and rhinitis
  • Adverse childhood experiences and highly stressful adult life events
  • Use of opioids (e.g. Fiorinal/Fioricet/Tylenol with Codeine, Dilaudid, OxyContin, Percocet) and barbiturates (e.g. Amytal, Nembutal, Seconal) to treat attacks
  • Allodynia, the experience of ordinarily non-painful stimuli as painful
  • Obesity

So what can you do?  Patients are often advised to manage risk factors for progression to chronic migraine when possible, such as losing weight, treating depression/anxiety, and avoiding risky medications.  And to be patient: many people eventually outgrow them, often in their fifties and sixties.  Many women expect that menopause will finally bring relief, but that only happens for about half of migraine sufferers.  In fact, surgical menopause actually increases the odds of migraine continuing, says Dr. Susan Hutchinson, Director of the Orange County Migraine & Headache Center, Irvine, CA.

Learning from Each Other

That’s what’s so great about the Migraine Journeys you’ve each shared this past year.  Each is different. Each is a poignant real-life, true story of one person’s struggles, lessons and victories with migraine.  Each is a sliver of that crystal ball we’re looking for to tell us what our migraine future holds.

It takes strength and a good attitude to tolerate migraine pain every day, every week or every month.  Until your pain improves, you can help someone else understand what lies ahead bysharing your Migraine Journey.  It’s easy, takes about 7 minutes to answer a few questions, and we don’t use your name to protect your privacy.

Your Migraine Journey could offer a warning, relief idea or comfort to someone else.  Can you help someone else stop chronic migraines before they start?