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Survey: Migraines are painful and misunderstood

There is a significant disconnect between those who have migraines and those who don't according to a new Lilly-sponsored survey conducted by Nielsen.

INDIANAPOLIS (WTHR) - There is a significant disconnect between those who have migraines and those who don't according to a new Lilly-sponsored survey conducted by Nielsen.

The Migraine Impact Report reveals patients diagnosed with migraines have pain nearly half of every month.

The pain is so significant respondents ranked, on average, migraine pain higher than childbirth.

The report found those unfamiliar with migraine underestimate the pain and duration of a migraine.

At St Vincent, JWM Neurologist Dr. Michael Sermersheim says unfortunately, the progress to educate about and treat migraines is slow. He says the findings of the report are disappointing and similar to what research found decades ago when he started in his specialty.

"It affects work production, family life, social life interactions, relationships. I've seen all those things go down because of migraine. The disease is a lot more than pain in your head. It is a very intense pain. It is debilitating. You lay down in a dark room because that minimizes the effect, but that doesn't make any of the pain go away and there is no one drug that works for everyone," Sermersheim said.

The study found even if a patient doesn't have a migraine, they report living to avoid one.

"Migraine affects people when they are actually not having a migraine attack they make plans around what happens if I have a migraine they decide not to do things because of a migraine," said Dr. Eric Pearlman MD, the Eli Lilly Medical Lead for Migraine.

Andrea Kriech, 63, can relate.

"You want to go inside of a basketball stadium I think ok where are the seats where are the bright lights...what about the noise? It's like on a day like today (with changing weather patterns) I wouldn't even try it." Kriech said.

Kriech tries to identify triggers like bright lights, changing barometric pressure and even red wine. She goes to Sermersheim for botox to control her migraines and also takes a prescription medication.

"I do worry about taking these drugs, the side effects...are horrible for me." Kriech said.

Right now, Eli Lilly has two migraine treatments in the pipeline. Galcanezumab is under FDA review for preventative migraine and in clinical trials for cluster headache. The drug maker plans to submit Lasmiditan to the FDA for review for acute migraine in the second half of this year.

"I think they are very exciting," Sermersheim said. "The data that was presented at the last headache symposium is very impressive even more so for safety than for effectiveness. There are may people who can't tolerate the currently medications. We need better choices."

There is a big market for migraine medications. It impacts 36 million Americans and one in five women, a rate that is three times the 6% incidence rate in men.

In the meantime, patients like Kriech try to power through and educate that what they have is much more than a headache.

"You learn to adjust to it. You learn to protect yourself from it and you live on because that is what you have to do," Kriech said.

Here is a summary of the Migraine Impact Report which was conducted in May of 2017.

The survey of U.S. adults, included 518 people who have been diagnosed with migraine by a healthcare provider, 200 people who know a family member with migraine and 300 community members who do not know someone with migraine.

Study findings:

People who do not have migraine often underestimate the pain and average duration of migraine.

· Nearly all respondents diagnosed with migraine (91 percent) agreed those who do not suffer from migraine do not understand the severity of the disease.

· 62 percent of those surveyed who were diagnosed with migraine agreed they try to hide the true impact of migraine from those at work or at school.

· On a scale of one to 10, those surveyed who did not know someone with migraine underestimated the pain of a typical migraine (an average score of 6.2 compared to an average score of 7.1 given by people diagnosed with migraine).

· On average, respondents diagnosed with migraine estimated the length of a migraine as 10.3 hours longer than those respondents who do not have migraine (an average score of 31 hours per migraine compared to an average score of 20.7 hours per migraine, respectively).

Migraine frequently adds stress and may result in less time with family.

· Among those diagnosed with migraine, 82 percent of survey respondents agreed it is stressful to have an unpredictable disease like migraine.

· Respondents diagnosed with migraine missed an average of 7.4 important events in the previous year due to migraine, such as birthdays, graduations or holiday gatherings.

· Nearly three-quarters of respondents diagnosed with migraine (70 percent) agreed with the statement, "I've avoided making plans because of migraine."

· Nearly three out of four parents surveyed who were diagnosed with migraine (72 percent) agreed migraine affects their ability to take care of their family.

· Among those surveyed with children under 13 years of age, 77 percent of people diagnosed with migraine agreed they were not able to interact as much with their children as they wanted.

Migraine may impact a person's career potential.

· Among employed respondents diagnosed with migraine, seven out of 10 (68 percent) agreed they have been less productive at work due to migraine.

· More than half of respondents diagnosed with migraine (55 percent) agreed the disease has affected their career goals, and one in three respondents diagnosed with migraine (32 percent) agreed they have turned down opportunities at work because of migraine, including a promotion.

· More than one-third of respondents diagnosed with migraine agreed they have missed out on opportunities at work (39 percent) or additional earnings potential (38 percent) because of migraine.

Most respondents diagnosed with migraine agreed they wish they could do more to manage their disease.

· 81 percent of respondents diagnosed with migraine agreed they wish they could do more to manage their disease, while more than half of those diagnosed with migraine (54 percent) agreed no matter how hard they try, they don't feel they can manage migraine.

· Notably, nearly all those surveyed who have a family member with migraine (90 percent) agreed they feel "helpless" when their loved one has a migraine.

· Among those who have a close relationship with someone with migraine, three out of four respondents (74 percent) agreed they would like this person to seek better care or treatment for their migraine.

For more migraines, visit the National Headache Foundation at www.headaches.org

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