California State Capitol Hosts INvisible Project: Migraine Disease Edition

California State Capitol Hosts INvisible Project: Migraine Disease Edition

Editor’s Note: The National Pain Report believes that not only is it important that chronic pain advocates influence federal policy (hence our coverage on CDC, DEA, FDA, HHS Pain Policy Report et al) but that each state deserves attention. As one key advocate once told us “There are 52 pain policies—the federal government and the 50 states plus Washington D.C. So what is happening in each state is important to us—our coverage in Oregon and Missouri, for example. When the largest pain advocacy group went to the nation’s largest state capital last week—we asked them to share what they learned.”

Sacramento recently welcomed pain warriors into the state capitol on July 10 to network and learn more about a debilitating, invisible illness: migraine disease. U.S. Pain Foundation’s INvisible Project, a print magazine and traveling display whose recent edition shares the stories of the brave children, adults and families who have been impacted by migraine disease, is touring across the country in an effort to raise awareness; earlier in the year, Rhode Island’s state capitol kicked off the state house tour.

Californians with varied pain conditions, including migraine disease, first participated in a morning educational briefing which included a brief welcome from Pajau Vangay, a Science and Technology Fellow with the Committee on Environmental Safety and Toxic Materials, chaired by Assembly member Dr. Bill Quirk, legislative sponsor for the event. The welcome was followed by a PowerPoint presentation by me.

The presentation provided an in-depth look at migraine disease, noting how the illness is a genetic, neurological condition that’s unpredictable, provokes over 40 symptoms, and is often misdiagnosed. The financial, socioeconomic impact within this unique patient population was also discussed, noting that migraine disease is the third most prevalent illness worldwide. Treatment options were also highlighted to expand on how individualized a person’s treatment plan can be.

An intimate discussion about migraine disease unfolded through a panel discussion, as part of the morning educational briefing. Jenn Heater, Resources and Advocacy Editor for MyChronicBrain.com and volunteer for U.S. Pain participated with her caregiver and mother, Gale Eisner Heater, MFT, as well as Michaela O’Connor, U.S Pain’s Director of Learn About Your Pain. All three live with migraine and shared their personal journey with the invisible disease.

Migraine warrior and support group leader for U.S. Pain, Cessa Marshall, drove over an hour and a half with her daughter Maura to join the educational briefing portion of the event. “I thought it was really helpful,” Marshall said after the panel discussion, noting that it featured different stories and treatments that work.

“That’s the thing with migraine – everybody’s story is totally unique, it seems. So what works for me might not work for you. I’m always interested in finding out what’s working for other people because I haven’t found that magic yet.”

Topics from the panelists ranged from surgical and therapeutic experiences to the importance of caregivers practicing self-care. The morning session concluded with panelists fielding questions from the audience to gain a better understanding of migraine disease and the existing treatments available.

To learn more about migraine disease, visit: http://learnaboutyourpain.com/migraine/.

To view the latest issue of the INvisible Project: Migraine Edition, visit: https://invisibleproject.org/magazines/2019-migraine/

If you have advocated in your state—please share your experience in our comment section.

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Authored by: Shaina Smith

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Dale Long

Alan Dean Thurman, you’ve basically described a life destroyed by the powers behind the “opioid crisis”. Why have you done nothing to those that have destroyed your life? Would you not fight back if attacked on the street? Until the attackers feel real consequence, this will continue.

Thomas Wayne Kidd

Voting does not work anymore. It’s a big waste of time especially for sick people who usually don’t feel well enough to even go to the poles.

Thomas Wayne Kidd

Just more noise! The true issues are being ignored. There was never a prescription opioid pain medication crisis in the first place. This lie was manufactured by people who know nothing! The illegal drugs continue to flow into this country and thousands continue to die. But the sad thing is that innocent people are dying because of this wicked hellish policy. Instead of waking up to the truth it continues. I suffered from Migraine headaches for years still have them some but this is not the issue. Population control is the plan. Wake up, Wake up!

Glen

Unless something has recently changed, there is no law, State or Federal forbidding a Licensed Doctor from prescribing pain medication. A VA Doctor once told me that he would prescribe but was not allowed. Not by law, but by policy of the Hospital. Same goes for Private Practice who are always affiliated with some Medical Network. Trying to “influence” Federal or State officials is what we all have been doing. They still think we need more laws. The Constitution was amended to stop the sale of alcohol and then amended again to legalize it!. (How’d that work out?) Opiates are making smugglers rich and more restrictions will make them richer. All the while honest pain sufferers will either suffer or become criminals buying street drugs. Addiction, suicide, and drug related violence will increase anyway. SOLUTION? First, lift all restrictions on opiates after 2013. (Just on legal prescriptions).

Hayden Hamby Jr.

The powers that be….are us. Our elect is simply following a handful of “experts” , “recommendations”, unlawfully conceived and implemented, behind closed doors. The “guideline” has forced….. every states’ medical directors into forcing people/patients onto another trail of tears. It seems that dialogue, an open dialogue to those “in charge” is difficult to achieve. Keep pushing to “fix’ this atrocity forced upon those of us that did not ask for intractable pain. They can’t navigate around the issue of adequate pain management forever. The pain management crisis is real. There are too many people/patients with documentation of the life enhancing reality that prescribed medication has afforded millions of people. Well done pain warriors!

Wendy

I used to get two to four
migraines monthly. During the 1990s Sumatryptan worked for me until an arterial occlusion disorder prevented me from using it. But then in the early 2000s I discovered Topomax & have been migraine free ever since. Started with 200 mg daily but that caused kidney stones; have tapered to 75 mg daily which prevents migraines and doesn’t cause stones. If I drop below 75 mg. The migraines recur. Hope this helps someone.

Alan dean Thurman

in illinois the doctors hands are tied. i recently tried to get a cat scan. meridian health denied the cat scan. OSF healthcare, said they tried to get the cat scan approved. i called meridian they said that aunt martha’s health care had not put the paperwork through to even be considered. So, in a nut shell the doctor offic didn’t put the doctors request in for the cat scan, the hospital osf, said we will do the cat scan (but u pay for it) the insurance company said nope we can’t allow a cat scan. where does that leave me????? imust say that since my doctor retired three years ago, i have had no pain medications prescribed. i have gained 85 pounds, i don’t leave my house fir more than an hour, my shoe size has increased one inch, i’m so fat i flatter my feet out. i haven’t cleaned my house for three years. i just want to say thank you to the powers that be. Before my doctor retired i was working, making decent money. now nothing. I think that opioid policy is not working for me. please consider a new program where 50 year old can decide what they do or do not put in their body. i blanket policy for everyone is not working for a lot of voting Americans. i say, vote any person willing to put patients of pain first.