VOICES FROM CAMPUS
Voices: What it’s like to live with an invisible disability

By Emma Miller, Columbia University October 13, 2015 11:17 am

“Not only does fibromyalgia cause your school work to suffer, but your social life suffers as well,” she says. “I was a young, ambitious, 20-something girl in Manhattan and couldn’t do half the things I wanted to, because of the lack of energy caused by constant pain.”
“Not only does fibromyalgia cause your school work to suffer, but your social life suffers as well,” she says. “I was a young, ambitious, 20-something girl in Manhattan and couldn’t do half the things I wanted to, because of the lack of energy caused by constant pain.”
Some disabilities are visible, and some are not. And for college students trying to balance their education and their health, invisible disabilities pose unique difficulties.

After all, how can schools accommodate a disability you can’t even see?

According to Deb Hileman, a spokeswoman for the Invisible Disabilities Association (IDA), invisible disabilities run the gamut.

“The term “invisible disabilities” can refer to debilitating pain, fatigue, dizziness, cognitive dysfunctions, brain injuries, learning differences and mental health disorders, as well as hearing and visual impairments,” she says. “They are not always obvious to onlookers, but can sometimes or always limit the daily activities (of the people they affect).”

But figuring out how to level the playing field for students affected by these disabilities is not an easy task. From op-eds about how to best accommodate diabetic students to debates about whether students with anxiety disorders should be permitted to keep emotional support animals, it can be hard to know just how to accommodate students whose disabilities are not physically apparent.

Fibromyalgia is just one example of such an invisible disability. While you likely wouldn’t be able to tell the difference between a student with fibromyalgia and a student without it just by looking at them, it’s a condition that can seriously affect students’ performance in school.

“Fibromyalgia (FM) is a common and complex chronic pain disorder that causes widespread pain and tenderness to touch,” explains Jan Favero Chambers, president and founder of the National Fibromyalgia & Chronic Pain Association.

“Both men and women with fibromyalgia often experience moderate to extreme fatigue, sleep disturbances, sensitivity to touch, light and sound, cognitive difficulties and a number of other overlapping conditions, such as arthritis.”

To Emily Thornton, who was 20 when she was first diagnosed with fibromyalgia, these symptoms are all too familiar.

“I have pain in my joints,” she says. “I have intense fatigue that lays me out for hours—sometimes days—at a time. I have aches that make it hard to move, and sometimes the pain gets so bad that I can’t walk or breathe.”

At the time of her diagnosis, Thornton was a sophomore at Fordham University-Lincoln Center in New York City, studying theater performance. And while she successfully graduated last spring, her fibromyalgia didn’t make that any easier.

“I often fell behind in my school work, especially in my purely academic classes,” she explains. “I had to take time off to sleep, and then I’d use all my energy to attend theater rehearsals. That was definitely not a sustainable solution.”

And according to Chambers, Thornton’s experience is quite common. “Students (with fibromyalgia) may miss class due to fatigue or pain,” she confirms. “And they may fatigue easily, so saving extra steps getting to class matters. Carrying a heavy backpack instead of a wheeled briefcase can cause muscle spasms and neck pain. Lack of sleep exacerbates fibromyalgia, and can put a college student into a fibro flare — a sudden increase of pain and symptoms.”

Some of the accommodations Chambers recommends that colleges make for students with fibromyalgia include giving students extra time to complete tasks that require hours of focused concentration; providing ergonomic seating; providing natural light instead of flickering, florescent light; and offering make-up exams, classes or assignments when symptoms become debilitating.

I was diagnosed with fibromyalgia at the beginning of my sophomore year of college,” she says. “I remember the doctor doing a pressure point test, where he pressed firmly with two fingers on different parts of my body. Everywhere he pressed, it ached, like he was pushing on a bruise. I had always thought was a normal experience — so I was surprised when he told me, ‘For everyone else, that doesn’t hurt.’”

The doctor prescribed Rosett one medication after another. The first medicine Rosett tried gave her nausea and vertigo; the second left her lightheaded and prone to passing out.

“With fibromyalgia, medication is really just a crapshoot. People come in expecting there to be some cure, but there’s not, and that can be really frustrating.

“When I flare up, my muscles ache, and I feel nauseous and exhausted,” she says. “One huge factor for me is stress — so I try to cut down on stress by sometimes allowing myself to skip a class, or to watch a movie instead of doing homework.

But Rosett says that sometimes creates a different kind of stress.

“In college, there’s such an emphasis on being productive all the time — and I sometimes feel like I’m being held to a standard that is so easy for everyone else and so difficult for me.”

“And it’s hard because you have less credibility when your disability isn’t visible,” Rosett explains. “People doubt you, or just think you’re trying to get out of work.

So how can students best support their peers struggling with fibromyalgia and disabilities like it?

“One of the most important things students can do to support friends with invisible disabilities is to believe them,” IDA spokeswoman Hileman stresses. “Sometimes we have our own ideas about how much a person with illness or disability should be able to accomplish for their condition to be ‘real.’ We should not make judgment about what a person may be able to do by how he or she looks.”

And Emily Thornton agrees.

“We do not need to be told by professors, deans or peers that our pain is not valid. Having people tell you ‘it’s all in your head’ or to ‘suck it up’ — that makes me want to scream,” Thornton says. “It’s not in my head and I fight all day, everyday, to even stay upright.

“We don’t need professors and administrators to give us a get-out-of-jail-free card, either; we just need our colleges to help us come up with solutions to help us get our work done without killing ourselves over our school work. We need help finding a balance.”

Emma Miller is a student at Columbia University and a fall 2015 USA TODAY Collegiate Correspondent.
accommodations, Americans with Disabilities Act, Columbia University, disabilities, Emma Miller, fibromyalgia, Fordham University, Invisible Disabilities, VOICES FROM CAMPUS

A note from Lollipops & CandyCanes: I am unfortunately unable to work or continue with school due to my invisible illnesses. I thought it was interesting to hear from someone fighting so hard to be “normal” in an “abnormal situation.” Stay strong Emma!

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.

Welcome to Fibromyalgia Symptoms
Fibromyalgia Treatment

9 hours ago by Fibromyalgia Symptoms

Muscle Relaxants for fibromyalgia

When people have issues with chronic pain, muscles often become tight, which can easily worsen pain.

Tight muscles can also cause legs, arms or other muscles to ache, which can worsen how someone with fibromyalgia feels because they have to deal with an aching body nearly every day.

Tight muscles can also cause knots to develop over tender areas that when touched can cause tremendous pain for some fibromyalgia sufferers. One way to help get muscles loose is to take prescription muscle relaxants.

Muscle Twitching with Fibromyalgia
People with fibromyalgia not only deal with sore, aching muscles, but they may have muscles that twitch as well.

Muscle twitches occur when the brain tells the muscles to move, even though you may be sitting or lying still. When this occurs, which is often at night, it often disturbs sleep or keeps people awake.

One cause of tense muscles and muscle twitching is stress and anxiety. Muscles tend to tense when people are under a great deal of stress, which can be caused by dealing with fibromyalgia on a daily basis, on top of work and/or family stress. Anxiety often causes the body to tense as well, which worsens muscle pain and twitching.

Twitching muscles can be treated to help reduce or stop it altogether. If the problem is severe, doctors will usually prescribe a muscle relaxant or an anti-spasmodic medication. The medication your doctor prescribes will depend on what your doctor thinks is causing the problem.

Types of Muscle Relaxants
Some muscle relaxants work to reduce pain as well as loosen tight muscles, but not all muscle relaxants work in the same way.

Muscle relaxants vary greatly from each other, so some of them may work better than others to help reduce pain and loosen muscles for people with fibromyalgia.

Most doctors begin patients with the lowest dose possible to keep them from feeling sleepy during the daytime.

However, a drug can work differently for each person who takes it, so doctors may adjust the dosage or change the medication if a muscle relaxant doesn’t work for one of their patients.

Some of the lightest sedating muscle relaxants include:
Metaxalone, which is sold under the brand name Skelaxin. The recommended beginning dosage is 200 mg.
Tizanidine, sold as Zanaflex, has a recommended beginning dosage of 1 mg. It comes in a 4 mg tablet that is scored two ways in order for it to be divided correctly.
Muscle relaxants that are considered to be benzodiazepines include:
Clonazepam, which is sold as Klonopin, has a recommended beginning dosage of .25 mg.
Diazepam, or Valium, has a dosage recommendation of 1 mg.
Alprazolam, or Xanax, has a recommended beginning dosage of .125 mg.
Benzodiazepines are used for many purposes, including treating anxiety, depression, insomnia and as a muscle relaxant.
Some of the most heavily sedating muscle relaxants are:
Cyclobenzaprine, which is sold as the brand name Flexeril. The beginning dosage recommendation is 5 mg.
Baclofen, also known as Lioresal, also has a recommended dosage of 5 mg.
Along with loosening tight muscles, these drugs can help reduce pain and restless leg movements that often accompanies fibromyalgia.

As a result, many people find it easier to sleep when they use these drugs before they go to bed. Taking them can promote a deeper sleep as the patient doesn’t have to deal with pain or restless legs while they are trying sleep.

How Muscle Relaxants Work
Tight muscles are not only painful, but they can make your body feel stiff and sore. The tendons and ligaments will also feel tight because the surrounding muscle tissue is squeezing them when they are tense.

While using topical ointments can help reduce the pain from tense muscles and help relax them, a prescription muscle relaxant works better for most people with fibromyalgia.

Along with helping muscles loosen up and relax, they also help block pain signals being sent to the brain and they help mask muscle pain.

With less muscle pain, the body can fully relax and allow the sufferer to rest more comfortably at night. It will also be easier to move around and do daily activities with the body more relaxed.

The Side Effects of Muscle Relaxants
Just as with most medications, muscle relaxants have side effects of which those using them should be aware. Along with being addictive, muscle relaxants may have several other physical side effects.

It is important that you follow your doctor’s directions when taking them because they can interact with other medications, which can lead to impaired thinking and functioning.

The side effects from muscle relaxants can range from mild to severe, though the more severe side effects are uncommon.

Some brands of muscle relaxants can leave a bad taste in the mouth or they can cause dry mouth as well for some people who take them.

Some people may also experience upset stomachs, nausea and/or vomiting. The most common side effect that occurs when people take these medications is drowsiness.

While drowsiness is common when taking muscle relaxants, some people may also experience feeling lightheaded, they may be unsteady on their feet or their thinking could be “foggy.”

Impaired thinking, eyesight or decision making can be experienced by some people taking muscle relaxants. People taking them should not drive or operate machinery after they’ve taken a dose of these medications.

When used with other medications, the efficacy of muscle relaxants could be increased, which can make taking them dangerous.

When used with alcohol, the sedative effect can be increased, which can cause dangerous impairment. It is also important to ask your doctor about possible drug interactions if prescribed a muscle relaxant.

These drugs have several benefits for those with fibromyalgia, including a reduction of pain, helping the body to relax and prevent muscle twitches.

References:

http://www.livestrong.com/article/177369-list-of-muscle-relaxants-for-fibromyalgia/

Pain runs like blood through my veins. It is a part of me. It’s not happening to me. IT IS ME! Every pain, noise, light, touch is amplified. Times 1000! The glare coming through the window. The landscapers outside with their tools. The jackhammers in my skull that never let go. The clothes I’m wearing hurt my skin. Everything is blown so far out of proportion. My nerve endings are on fire. Nothing eases or soothes. The pain meds dull my senses a bit, but not enough. I sit in my bed, in my room, in my house, in my bubble. Scared to go out where I have absolutely no control. At home, I can close the blinds, wear noise cancellation headphones (to dull outside noise, but not my internal pain), try to find comfortable clothes to wear. The sheets on my bed hurt me. I can no longer distinguish the migraine “fog”, from the Fibro “fog”, from the medication side effects “fog.” I don’t know which reactions are from my illnesses and which are from side effects. My life is lived on a continuous loop of blurred vision, balance problems, falling, not sleeping, not eating right, nausea, vomiting, trying to be understood while not being able to articulate words, the crushing blackness of depression, the panic attacks, the insomnia that leaves me even less able to fight every day. I try to remain hopeful. A treatment that helps, a procedure that gives me relief, a cure. And yet, I cry all the time. I grieve for the me I was not so long ago. I cry for the days passing me by with my participation. I’m not living, I’m surviving.

So, this morning I said to Mom, “I feel so much better about the Hearing. I’ve finally realized that I have done all I can to make it a positive outcome.” And I had. I did my research, sent all of my findings to my law firm, confirmed with SSDI that I would be there on Thursday, and spoken with my lawyer. It was out of my hands. All I could do now was stay in this new positive frame of mind and show up to the Hearing.

Then the phone rang. My law firm contact told me that they hadn’t received my medical records from Dr. Pain or Dr. Panic yet. They were requested back in August and September. When called that morning by the law firm, Dr. Panic’s office insisted that I was not a patient of theirs. Needless to say, but I will anyway, I lost it! I asked what that meant for my case if the records weren’t received in time. I was told the Hearing would go on, but the record would stay open until subpoenas were issued and my records were received by the Judge. This meant a decision could be delayed even longer. I broke down and couldn’t stop crying. I was angry, upset, scared, panicked, and beyond speech. So much for my positive mindframe. Gone! Just like that! I’m so fragile right now. I feel like I’m teetering on the edge all of the time. Anticipatory anxiety. My lawyer assured me they would take care of the issue of the medical records and for me to leave it to them. That is what they are getting paid for, but it’s hard to give up control and leave it in their hands. I feel like I haven’t done all I can. So I’m stressed once again. It’s going to be a long week. Please send positive thoughts and vibes my way! Better days ahead.

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.

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.

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.

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.

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.