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Have you ever tried an unproven remedy to treat migraine? I’ve tried a lot of them. Some worked, some didn’t, and some I still use. My headache doctor offers a lot of patient education on triggers, lifestyle, complementary treatments, and stress management. Because he is a migraineur, too, his advice is practical and reasonable. Yet even his tips aren’t always enough. Over the years I have learned by trial and error that some things just work. I don’t know why they do. There is no research to support my experience. Yet I feel better and get fewer migraine attacks because of everything, not just medical treatments.
I love my quarterly Botox injections. This one treatment was the single biggest game changer in all my years of living with migraine. The only other treatment that ever came close was the use of triptans to abort an attack. Even so, I wouldn’t dream of only using these two options. Many of the treatments I use are supported by research. Others have no scientific support at all, but they work for me.
Here are some examples of treatments I have tried that have limited or no scientific support:
Do I recommend all of these treatments to you? No way! If something on my list interests you, I suggest you talk to your headache specialist, do your own research, and make a joint decision on what’s best for your unique situation. If you don’t have a headache specialist, I’d recommend you get one before you make even one more treatment decision. Having an expert on your team can mean the difference between good migraine management and daily migraine attacks that are nearly impossible to treat.
Migraine research is still woefully underfunded. The NIH allocates about 53¢ per patient per year for migraine research. The rest is up to academic grants and pharmaceutical research. That doesn’t leave much room to study alternative or complementary treatments. It’s just not possible for scientists to cover every possible treatment with so little money. Even if researchers discover that a given treatment is ineffective, that doesn’t mean it won’t work for some people. It just means that the majority of people won’t benefit. Who knows, maybe you’re the only one for whom that treatment works. But if you get relief, you won’t care what science says, now will you?
Here’s the rub with unproven treatments: I have a huge problem with people who try to promote unproven methods as “the cure” or make claims based on incorrect information and/or anecdotal evidence. It is one thing to share what works and quite another to sell that “fix” to everyone without a shred of scientific evidence. If something works for you, GREAT. I will be the first one in line to cheer you on. Try to make a quick buck off desperate people, and I will call you out on it every time.
UCLA announced this week that Wendy and Leonard Goldberg donated $10 MILLION for migraine research. After witnessing the devastation migraine had on the lives of their friends and loved ones, the Goldbergs made the choice to be part of the solution. It is the largest donation for migraine research ever recorded and its impact cannot be understated. This single, generous donation is equivalent to roughly half the NIH yearly budget for migraine research.
Dr. Andrew Charles (who will be leading the UCLA Goldberg Migraine Program) had this to say, “Migraine is generally under-recognized as a major medical problem, in part because it is not fatal. But it is not hyperbole to say that it can ruin lives.”
If you or someone you love has migraine, you know how true Dr. Charles’ statement is. You live it every day. Now there is new reason to hope. Some day our children and grandchildren may be able to reach their full potential, unhindered by migraine and its stigma. When that day comes, they will have Wendy and Leonard Goldberg to thank.
I’m holding back tears of joy just thinking about the possibilities. Trying to imagine a world where migraine is taken seriously and treated effectively is overwhelming. My children and grandchild deserve to live in that world. Yours do, too.
$10 million gift to UCLA from Wendy and Leonard Goldberg is largest ever to support migraine research
Share your thanks with Wendy and Leonard Goldberg
$10 Million Donation for Migraine Research!
The holidays can be full of potential migraine triggers. Trying to get in the “holiday spirit” can be difficult when you are on alert for all the dangers. Yet vigilant you must be if you want to lower the risk of spending all day in bed while your loved ones enjoy the party.
Here are just a few of the things to watch out for:
Alcoholic beverages can be a trigger for some migraineurs, especially red wine because it contains tyramine. Some other beverages can be problematic, too. Anything with high levels of caffeine, artificial sugar, or artificial coloring can set off a nasty series of attacks. To minimize this risk, limit your caffeine intake to once a day at the same time and stick with all-natural beverages such as juice, milk, and lots of water the rest of the day.
Have you ever wondered how meat can be preserved at room temperature in that air-tight plastic? It is possible, in part, because of preservatives known as nitrates and nitrites. Among other health problems, these chemicals commonly trigger migraine attacks. It’s best to stick with fresh foods in their natural state.
Caramel, cinnamon, cheese, and many other gourmet flavors are packed full of additives and preservatives, not to mention way too much sodium. It’s safer to stick with popping your own. Season it with real butter and a little sea salt to avoid another migraine attack.
Food that is left to sit out at room temperature for several hours can begin to break down, increasing its tyramine content. Leftovers that are several days old can also contain high levels of tyramine. Headache specialists recommend migraine patients limit their intake of foods high in tyramine in order to avoid this common trigger.
If you have migraine, disrupting your sleep schedule is one of the bigger risks. Studies have shown that even minor changes in your sleep routine can set you up for more migraine attacks. Plan ahead so you can stick to your schedule.
Some migraineurs can tolerate limited exposure to naturally-scented candles. However, most candles and potpourri are perfumed-scented. For the most part, it is best to avoid these whenever possible. If your loved ones are willing, ask them to refrain from burning these types of candles and use live plants rather than perfume-drenched dried ones during celebrations.
Whether it’s the rhythmic flash from lights on the tree or your neighbor’s outdoor lights, flashing lights can have the same effect on migraineurs as a strobe light. Stick to non-blinking lights and dark shades to protect your sensitive eyes from the flashing lights that others display.
During a migraine attack, our hearing is very sensitive. Sounds are magnified to the point of being painful. These loud noises definitely make an ongoing attack feel much worse. For some migraineurs, the loud noises are even enough to trigger an attack. Keep a pair of earplugs or headphones handy to muffle those booms and shrills.
Going too long between meals causes drops in blood sugar that can trigger migraine attacks. Ideally, eating small frequent meals every 3-4 hours. This can be challenging during the holidays with all the decorating, shopping, and party planning. Plan ahead by stocking up on healthy, high protein snacks that will keep your glucose levels nice and steady far into the next year.
If you take regular medicines or supplements to prevent migraine attacks, it is essential to continue taking them on time throughout the holidays. It can be easy to forget, so set reminders or alarms on your phone and carry a full day’s worth of doses in your purse or pocket.
By committing yourself to avoid these potential triggers, you might discover that you are able to enjoy the celebration with your loved ones migraine-free.
No one ever guessed that this socially awkward child had autism. After all, she didn’t fit any of the stereotypes. She was highly intelligent, meeting all developmental milestones ahead of schedule. She was polite and articulate with seemingly good social skills. The clues were very subtle that much of her inner world was regimented, repetitive, and restricted. It would take a highly trained expert to spot these elusive clues.
There was another side of her she kept in check most of the time. She learned early that other people did not like it, so she suppressed it as best she could. She was hypersensitive to stimuli. Lights, sounds, smells, noises — it was all so overwhelming. Sometimes the urge to shut out the world was irresistible, yet she tried to turn off the impulse to curl into a ball, rock back and forth, and scream in protest. In doing so, she only built up emotional tension that inevitably demanded release. The meltdown would come as an angry, unprovoked outburst or buckets of hysterical tears that could not be soothed. The explosion simply had to run its course. Out of steam, she would collapse in a heap, unable to stay awake.
Her parents noticed the pattern, but interpreted the problem incorrectly. They assumed, since she fell asleep at the end of the meltdown, that exhaustion was the cause. So they encouraged her to relax and rest more often. She resisted their attempts to slow her down.
Then there were those unfamiliar social interactions. Whenever she was faced with a new social situation, she behaved out of character. She would withdraw, almost as if she were shy. What no one knew was that she carefully rehearsed her behaviors. Each one was crafted according to the social rules she observed. Social interactions did not come naturally to her. She had to practice them over and over in order to fit in. When new situations caught her by surprise, this normally poised young lady became an immature social pariah. She responded with odd comments, inappropriate emotions, poor physical boundaries, and complete lack of comprehension with sarcasm, innuendo, or humor. In short, sometimes she was really weird.
Everyone saw these lapses and knew there was something unusual about her. But no one ever thought to consider autism. In the late 80s, autism was believed to only affect boys. Even then, only the most severely non-verbal children were diagnosed. It would be almost 30 years before society started to recognize the unique sub-type of autism that affected this little girl.
That little girl grew up undiagnosed, untreated, and misunderstood.
That little girl is me.
I knew I was different. I didn’t want to be. I wanted to fit in. I wanted to stop the stares and eye rolls directed at me. It hurt. I just didn’t always know how to fix it. Sometimes my attempts to correct my behavior only made my problems worse. It was just so much easier to stay locked inside the quiet safety of my own mind. But it got lonely in there. I wanted friends. So I kept trying.
Wanting to understand people, I eventually became a student of human behavior. Those studies led me to a job working with people on the ASD spectrum. I was a natural. I understood these kids in ways I couldn’t explain. Their struggles were familiar and my compassion kicked in. I felt at home. Meltdowns didn’t alarm me. Instinctively, I knew how to calm an overwhelmed child. I didn’t have to rehearse my lines anymore.
I knew the truth about myself now, but kept it hidden. Even though I learned that symptoms of autism are difficult to hide from the trained eye, I tried to disguise myself. Surrounded by a team of some of the best autism clinicians in the city, I thought I could hide in plain sight. After all, what would it mean for my career if someone outed me?
I eventually accepted the truth and openly acknowledged my autism after a colleague diagnosed my son. The behaviors she described were traits he inherited from me. I confided in her with my suspicions. She confirmed what I had been trying to hide. Apparently I’d been hiding pretty well, because it took describing my socially awkward childhood before she finally saw the truth. I had been faking neuro-typical (NT) my whole life…and doing a damn good job at it.
But I was tired of faking my way through life. It is exhausting trying to be someone you are not. I can fit in, but sometimes I need a break. I need to retreat inside my quiet bubble, block out the world, and give in to my urges. When stress is high and no one is looking, I stim. Some days I don’t speak a word. It is sweet relief.
I have high-functioning autism and it doesn’t look anything like you would expect.
There are so many treatment options to help manage migraine; it can be difficult to know what to try next. That’s why it’s so important to find a good headache specialist you can trust. Together, you can work as a team to create the best treatment plan that’s right for you. Migraine is a complex neurological disorder. Researchers have yet to determine what causes migraine, let alone discover a cure. That doesn’t mean there are no treatment options. In fact, there are hundreds that can be tried.
In addition to medication, trigger avoidance, and lifestyle management, there are a growing number of questionable, unproven treatments. Desperate for safe, effective options, many of us will seriously consider one or more of these treatments. We may even decide to try a few of them. At best, we will get lucky and find some relief. At worst, these treatments may create harm or delay us from getting proven treatments.
With a shortage of headache specialists, health care providers from all disciplines are jumping into the migraine treatment arena. Dentists, chiropractors, plastic surgeons, cardiologists, physical therapists, naturopaths, and even unlicensed, untrained wannabes are offering to treat, and even “cure” migraine. Some of the treatments have been subjected to clinical trials, but most have no good science to support their claims. They may or may not help the problem.
These controversial treatments are often tempting because they claim to be safer and longer-lasting than the tried-and-true treatment available from headache specialists. The ugly truth is that many of these options are only effective for a small fraction of patients. Often, patients reach for unproven treatments before they have even been properly diagnosed. Both patient and doctor may erroneously believe that migraine is the problem when another condition better explains the symptoms.
For the most part, controversial treatments aren’t necessarily bad or unsafe (although some can be). One big problem is that unproven treatments are rarely covered by insurance and come with a high price tag. These treatments also offer a false sense of hope by promising relief and/or a cure that isn’t possible. When a treatment fails, many times the patient is blamed for the failure because he or she “isn’t doing it right”.
Because patients often view controversial treatments as a “last resort”, depression can set in when these treatments fail. Patients start believing that there is no hope. Living with migraine is hard enough. The last thing we need are parasitic charlatans seeking to make a profit off our suffering. Don’t believe anyone who tells you there are no more options. There is always another option.
There is no shortage of people trying to capitalize on the increased awareness of migraine. False claims of a cure are all too common and tempting. It’s an ugly result of greater public recognition. The more we talk about migraine, the more questionable claims will pop up. Honestly, there aren’t enough insulting names in the English language to adequately describe the revolting anger I feel toward those who would take advantage sick people, desperate for relief.
Migraine isn’t the only disease that is a target. We just finally got enough name recognition to make it worth someone’s effort. Now that the public is learning to take migraine seriously, more patients are looking for better answers. With a shortage of medical experts, wannabes and quacks are trying to fill in the gaps. The scariest part is that many of these so-called doctors really do think they have a cure. Their knowledge is often based on outdated information and faulty science.
The doctors and researchers who specialize in headache medicine have learned a lot about what happens during and between migraine attacks. This has resulted in greatly improved treatments. For the vast majority of episodic migraine patients, current treatments are safe and effective. Unfortunately, there are still millions of patients with chronic migraine for whom even the best treatment options have failed. Many are misdiagnosed and over half of those who suffer from migraines have never even talked to a doctor about them.
Despite the advances of recent years, experts still don’t know what causes migraine. It is impossible to develop a cure until the cause is known. Granted, those who claim they have a cure, also claim to know the cause. If they really did have that information, it would be the lead story for every major news outlet. The person who discovers a cure will be on the short list for a Nobel prize in medicine. Their name will be synonymous with Curie, Pasteur, Salk, Flemming, and Jenner.
So before you give in to temptation, do your homework.
Ways to spot a fake cure:
A true cure would be time-limited and permanent. In order to cure migraine, a treatment would have to accomplish the following:
Nobody can do that yet. The best minds in headache medicine can’t offer that kind of result. The best we can hope for is either remission or effective management. Some patients no longer experience headache pain as a result of a variety of treatments. Many more have been able to limit the impact of migraine by preventing most attacks and quickly stopping the remaining few. But that’s not everybody.
If you are still looking for answers, please be careful. There are plenty of unscrupulous people trying to profit from your misery. If it sounds too good to be true, it probably is. I’m not suggesting that the only effective treatments are pharmaceuticals. Instead, I urge you to choose carefully and do lots of research. Don’t be fooled into thinking that anyone can offer you a cure for migraine. That simply doesn’t exist right now.
We have a tendency to wear emotional and mental blinders, forgetting that the rest of the world is suffering so much more. It’s called ethnocentricity and Americans are notorious for it. It’s easy to get caught up in our own problems and lose sight of the big picture. I had a conversation yesterday that makes me grateful I live in the U.S. We complain about the limited number of headache specialists and the high price of treatments, but it could be so much worse.
Imagine instead that you live in a 3rd world country. Their medical systems resemble the U.S. system from the early 1900s. In their world, migraine is viewed in a much more negative light. If you think the stigma is bad here, try living in a world where there are absolutely no headache specialists and medicines we take for granted are either too costly or must be imported. Doctors routinely use narcotic pain killers to treat migraine and patients are called “lazy”, “stressed out”, and “crazy” when treatment does not help. Visiting the ER for out-of-control pain is unheard of. Chronic migraine is not considered a real condition. Instead, patients are blamed and told to “stop making excuses”. Given these circumstances, how well do you think you would do?
It’s easy to get caught up in the challenges and barriers we face and lose sight of the bigger picture. Migraine doesn’t just affect 38 million citizens of the U.S. It is a global problem. The problems faced by migraineurs around the world are so much more difficult than our own. Even at our worst, we are privileged. Imagine how difficult migraine treatment would be without access to electricity, refrigeration, clean water, and even basic OTC medications. How would you fare without ice packs, heating pads, cold water, hot showers, and all the modern conveniences we take for granted?
I’ve had a small taste of this reality when I would spend weekends on primitive campouts with Boy Scouts. Yet unlike my fellow migraineurs around the world, I had the option to give up this activity when migraines interfered. Most cannot escape. They are trapped in a world that is openly hostile to their suffering. Our migraine brothers and sisters are ostracized, ridiculed, and blamed for a neurological condition they cannot control. Even when they are able to seek help, the quality of care is poor. The medical understanding of migraine is decades behind our own. Migraine is all too often viewed as a psychological problem or character flaw.
Migraine doesn’t stop at our borders. It is the 7th leading cause of disability worldwide, yet most are without access to even the most basic treatments. There are over 1 billion migraineurs, worldwide. The stigma is so great that they feel they must hide their pain, even from their loved ones. Doctors and effective medical treatments are either unavailable or so expensive that the average person cannot afford to seek treatment.
Let us look beyond our own suffering to see the plight of every migraineur around the world.
Although I have been diagnosed with several invisible illnesses, this year I decided to focus my 30 Things meme on just the most recent diagnosis. It’s the one that’s had the greatest impact on my daily life so far this year. The stairs are my worst enemy and the pain can limit my mobility to the point that I can barely walk at all. I’m not always symptomatic and sometimes the symptoms are not obvious enough to be noticed by others. Visible or invisible, the disease is always present.
Living with an invisible illness can feel like a constant battle. In the beginning, we fight for answers, a diagnosis, and treatment options all in the hopes of getting our life back to normal. We fight to be taken seriously, to be believed. We fight through the unpleasant symptoms and side effects, desperately clinging to anything resembling normal life. As the weeks, months, and years pass we discover that there really is no going back. There is only moving forward.
Life becomes a series of negotiations and trade-offs. One day it is possible to function almost at our pre-illness levels. The next day we are so ill that we must stay in bed to recuperate. We weigh the potential impact of nearly every decision. Days are measured in small increments. When accomplished, everyday tasks become cause for celebration. Nothing is taken for granted anymore.
Then there are the losses we must grieve. They can be so numerous that grieving becomes a way of life. We may lose some of our independence, our mobility, even our mental sharpness. We often lose friends, too. Our journey has followed a different path than our healthy friends and loved ones. We find that there is this part of us that can only be understood by those who have walked a similar path. We have fewer things in common with our old friends because there is such a vast difference in our experiences. Old friends are now strangers. New friends are more like family.
Accepting that change is a process, one we come to on our own terms. Even when we finally accept this new reality, those closest to us might still cling to a thread of hope that the old, healthy person might re-emerge. Coming to terms with our illness may be more challenging for those who must watch from the sidelines. Our loved ones have their own journey to walk. Their grief process can easily be misinterpreted. We might internalized their emotions, believing that we are the target of their anger, frustration, and grief. Honest, open communication is essential to navigate this process. Many close relationships do not survive it.
On good days we fight to feel normal. On bad days we fight through the pain in the hope that it will soon end. In our weakest moments we long for that vibrant, healthy person we used to be. The longer we face our invisible illness, the fainter that image becomes. If we are lucky, we slowly forget what it was to be healthy. We embrace this present reality and find ways to let our true selves shine through. It will never be quite the same. Life has forever changed.
It takes courage, stamina, tenacity, and a lot of hope to fight an invisible illness every day. Only those closest to us ever really see the battle. Everyone else is privileged to be blissfully unaware. We look like everyone else, but we are definitely not the same.