New Year’s eve. A time to reflect upon the past year. Remember good times and bad. I’ve had both. A lot of painful days and sleepless nights. Medical tests and medication side effects. New meds. New symptoms. A positive outcome to a nearly five year fight for Disability benefits. Lawyers, doctors, judges, paperwork. Social services. Some assistance there. Social Security and Medicare with less hassle than I expected. Mom is doing well. Good medical reports on her health. Positive (fingers crossed and prayers said) outcome for my furbaby Samantha’s surgery. An unbelievable outpouring of love for me and Samantha from our fundraiser. Thanks again to all of the donors and well wishers. Thoughts about moving back to my home state of Delaware. Not sure just yet. I’d hate to leave my doctors, but there are plenty nearby in Philadelphia. Options. I’ve been homebound more this year than any other. Trying to stay positive and strong. I still have treatments and medications I haven’t tried. I’m pushing myself harder than ever to go out, keep appointments, even just go to lunch. Home is comfortable. I can control my environment. But I can’t let it get too comfortable or I’ll never want to leave. I have to say a huge thank you and I love you to all of my online friends. You’ve been my only link to the outside world for most of this year and previous years. You’ve all been so supportive and empathetic to my issues. I feel the love through your posts and messages and even phone calls from some of you. I’m so grateful to have my online communities and groups where I can open up about my situation and my feelings about everything. Finding people with similar interests and issues and discussing solutions and options with them. Just to know y’all are out there makes things easier. Much love to every one of you. Best wishes for a happy, healthy New Year to all of you and your families and friends. 2016 will be a better year! Carry on and Always Keep Fighting! 💕
A Former Federal Peer Reviewer’s Analysis of the Draft CDC Guidelines
Posted on December 30, 2015 in Government with 8 Comments
Brooke Lee Keefer
In my former life prior to chronic pain and illness I had many important and fascinating jobs. One was as a peer reviewer for the United States National Institutes for Health (NIH), Center for Mental Health Services (CMHS), and Substance Abuse and Mental Health Services (SAMHSA); and New York State’s Education Department, Office of Mental Health, and Office of Alcohol and Substance Abuse Services. I reviewed multi-million dollar grants, provided consumer input to agencies, and served on publication committees and focus groups. When the opportunity arose to comment on the draft “CDC Guideline for Prescribing Opioids for Chronic Pain”, I looked forward to reawakening my peer reviewer skills to objectively identify the strengths and weaknesses of the document.
Unfortunately, I found it near impossible and beyond frustrating to review this document in an objective manner. The guideline is not organized like a typical guideline or tool kit. It is nothing more than a literature review of the harms and risks of opioids. It is not objective, therefore, I found it impossible to be objective. It was biased which made me completely biased (in the other direction). Reading this document left me scared—really scared. It left me wondering what happened to the United States and to the rights of patients? How could this be? No consumer groups or chronic pain patients were included in their peer review or “experts” process. A huge no no. Here is the comment I posted on the CDC site (I omitted my introduction):
As a consumer and citizen, I request you halt further activity regarding these guidelines until a consumer board can be developed—one that is solely made up of chronic pain patients who have experienced primary care access issues to opioid medication. I also request you conduct focus groups of chronic pain patients who are on opioids. Only then will you have guidelines that serve the public, the primary care doctors, and the chronic pain patients.
It is imperative a section in the guideline be created detailing how adequate pain control is a fundamental right of every patient. Point to the Joint Statement from 21 Health Organizations and the Drug Enforcement Administration, “Promoting pain relief and preventing abuse of pain medications: A critical balancing act” which states “Effective pain management is an integral and important aspect of quality medical care, and pain should be treated aggressively… Preventing drug abuse is an important societal goal, but it should not hinder patients’ ability to receive the care they need and deserve” (http://www.deadiversion.usdoj.gov/pubs/advisories/painrelief.pdf). In addition, in this section provide a thorough review of the risks of untreated chronic pain, i.e. suicides, depression, unemployment, lower quality of life, etc.
Throughout this document it is mentioned there are no adequate long term studies that prove opioid medication is effective, leading the reader to believe opioid medication never helps patients long term, which is not true. If you conducted a focus group of chronic pain patients you would understand the complexities of opioid pain management and long term effect. It became clear to me this document was written in a biased manner when I read the “Effectiveness of Alternative Treatments” section. It boasted these treatments effective under 6 months. Nowhere in this document did I see a similar positive citation for opioid treatment for short term use though hundreds exist. The writers excluded the fact these alternative treatments, like opioids, had no proven long term benefits. Furthermore, the alternative pharmacological agents, i.e. gabapentin, SSRIs, NSAIDs, etc. are touted as excellent treatments with little to no risks. The writers should have included information on the hundreds of possible side effects, some very serious, each of these drugs carry. The risk of death, overdose and suicide is very real for some of these medications and literature citations stating as such was discluded.
The statistics in the Background section do not delineate criminal activity from actual chronic pain patients in a pain management type setting. It also does not define whether in overdoses there were additional drugs or alcohol contributing to the overdose (polydrug overdose) and whether these overdoses were legitimate pain patients or illegally obtained prescriptions. These guidelines should not include such statistics. This is not a paper about criminal activity and misuse. Only statistics for actual pain patients should be included.
Information must be included describing the fact primary care doctors may be the only opioid prescriber in their area as most pain management doctors no longer manage chronic pain with opioids and specialists refuse to prescribe. Primary care doctors have by default become pain management doctors. As such, pain patients should not be punished for this trend. I did like that you included a few sentences encouraging physicians to be compassionate. Please expand on this. Most of us are treated like a nuisance and criminal. Include information on the difference between physical dependence, tolerance, and addiction/misuse of opioid medications.
Information about actual pain conditions is slim, which is disconcerting. The fact you include cataracts as a painful condition and not severely painful conditions like chronic pancreatitis, complex regional pain syndrome, shingles, back and spine issues, trigeminal neuralgia, endometriosis, adhesion pain, kidney stones, and more shows the lack of familiarity of the team of writers with true chronic pain populations.
Teach patients basic opioid safety—keeping the opioids locked away and out of teenagers’ hands. Many patients are naïve to think their teens would never consider experimenting with their meds or visitors won’t snoop through a medicine cabinet. Providing real-world information will prevent unnecessary overdoses NOT limiting chronic pain patients their pain medication. Also, the naloxone section should be removed or limited to a sentence. True chronic pain patients rarely experience overdose and should be dealt with by emergency personnel.
—End of comment—
The CDC is clearly not the appropriate agency to spearhead opioid prescribing guidelines. They are good at authoring literature reviews on ebola and trying to find cures for diseases. They are NOT equipped to publish guidelines of this manner. This is not an epidemic and they are incapable of being objective. A document like this must be objective and unbiased.
Brooke Keefer is a mom to three sons ages 28, 19, and 4 and has a 2 year old granddaughter. Brooke has a Bachelor of Science degree in Mathematics from the State University of New York at Albany. For over 15 years she worked as a not-for-profit director, lobbyist, advocate, and a grants writer, manager, and reviewer in the field of children’s mental health. Brooke suffers from several painful conditions—sphincter of oddi dysfunction (a defect in the pancreatic/biliary valves), chronic pancreatitis, and fluoroquinolone toxicity syndrome (long term adverse reaction of the nervous system to Levaquin). Though these have disabled her, she writes health articles, advocates for patient rights, and runs the Sphincter of Oddi Dysfunction Awareness and Education Network website, http://www.sodae.org.
Readers Give Thanks for the Largest Donation Ever to Migraine Research
By Kerrie Smyres—December 14, 2015Readers showed a stunning outpouring of gratitude for the Wendy and Leonard Goldberg’s $8 million donation to migraine research, part of a $10 million donation to UCLA Health Services. Many of the comments were spontaneous expressions of joy, beautiful in their heartfelt simplicity: “10 million likes!” “Woo hoo!” “So grateful!” “WOW!” “Awesome!” “Amen!” Here are some more words of thanks from Migraine.com readers and patient advocates:
“The Goldbergs have touched a nerve. It’s so significant that it’s hard to explain. Perhaps it is that migraine has simply been ‘heard’ by kind hearted souls whom are able to make a real difference. Thank you to the Goldbergs for listening and giving. “
“Is there an emoji for doing cartwheels with rainbows and unicorns in the background? Because that’s how amazing this is!”-Katie Golden, Migraine.com Patient Advocate
“I am so grateful. I have tears in my eyes right now. My husband has had daily migraines for the past 10 years. So grateful someone cares this much.”
“Wow! So generous and so reassuring that someone actually understands what so many of us are going through and that we’re worth the research efforts.”
“Dear Wendy and Leonard: Your amazing gift makes it the first time in history it can feel good to be a migraine sufferer. Thank you so much.” -Lisa Benson, Migraine.com Patient Advocate
“Seriously brought tears to my eyes. Such a beautiful thing.”
“Good things are on the horizon, I can just feel it!!”
“this is the most wonderful news i have heard in a long time.”
“sooo wonderful for all of us and we thank them from the bottom of our hearts” ❤
“Oh my goodness! This is exciting news. They are wonderful, generous people and I pray God’s blessings for them.”
You can read even more thank yous on Migraine.com’s Facebook post about the donation.
Now in her late 30s, Kerrie has had chronic migraine since she was 11. She’s been writing about migraine and headache disorders on her blog, The Daily Headache, since 2005. Kerrie is also the cofounder of TheraSpecs, which makes eyewear for migraine and photophobia relief.
While fibromyalgia, medical marijuana, CRPS and migraines were all covered by the National Pain Report in the last week, it was the Centers for Disease Control that dominated the coverage and reader reaction. The CDC first re-opened its public comment period on its opioid guidelines under pressure from the pain community. Then the CDC issued another press release that talked about the dangers of opioid medication saying that opioids were involved in 28,647 deaths in 2014 and opioid overdoses have quadrupled since 2000.
Those created an intense reaction from National Pain Report readers. In particular, the CDC took much of the incoming fire.
Paul Clay, like many, called out the process that had led CDC to its controversial guidelines when he wrote, “Your committees should have at least a couple of chronic pain patients on these panels.”
On our Facebook page, the theme was familiar. Why is the CDC (and the DEA) focused on opioid abuse at the expense of the millions of pain patients who use opioids responsibly.
Juli Link wrote, “I’m not an abuser. I’m a patient. I have a right to be treated as such instead of lumped into the notion that anyone who takes an opiate is a degenerate.”
Mary Eischen went further. “CDC needs to keep their (its) nose out of my pain medicine. I don’t abuse it. I am NOT an addict. I do depend on it to take away my chronic pain. So leave us alone.”
Marty Collachi also thinks the CDC is focused on the wrong problem.
“They are so worried about Junkies dying that they are putting honest chronic pain patients through absolute hell. So much hell that they better start counting the numbers of how many suicides there will be because of the legit patients not getting the medical care they need and deserve.”
While the National Pain Report is honored to attract (and share) this reaction from the pain community, others focused on the need to make sure the government is hearing complaints, and once heard, reacts to it responsibly.
Amy Vallejo’s reaction to the CDC story was direct.
“Keep writing legislators, governor, president and everyone in between. We need more PUBLIC Facebook pages to share articles and use hashtags so people can look things up faster. It’s a lot of work but WE have a voice and WE individually and together need to let them know what the real deal is!”
Terri Lewis, PhD, who has taken the CDC and other regulatory agencies to task for not having the right data and then interpreting it the wrong way, called the CDC report “junk science”.
Dr. Lewis, who is experienced in such matters, also wrote a story that recommends HOW to make a public comment to a federal agency. It’s recommended read if you plan to leave a public comment on the CDC opioid guidelines. Her advice is being clear and not emotional. (Tips on how to comment on CDC guidelines)
Once you read Dr. Lewis’ story and you plan to comment, you can do so here.
If you do submit a comment and want to share with our readers, send a copy of it to us here,
After 5 yrs of episodic migraines, I’ve graduated to chronic daily (intractable) migraine. I’ve tried Botox, chiropractic, biofeedback, vitamins, minerals, supplements, acupuncture, acupressure. Looking for preventive. I’ve tried around 20 of them with no lessening of symptoms, or side effects worse than the Migraine itself. Abortive triptans have too many side effects, beta blockers didn’t work. Antidepressants, Elavil, Zyprexa, numerous others, no luck. I’m currently in the hell of pain management. Awesome doctor, trying injections, but dependent on Opioids as main drug. Ativan for anxiety, Prozac for depression, Toradol injectable works for 1-2 days, but can only use 2x/mo. I don’t want to live like this. I want to get my life back. I’ve been unable to work since 2011. I was finally approved for SSDI after 4 yrs., 3 appeals, and an awesome lawyer. Once benefits start regularly, whenever that many be, I will try injections under anesthesia and a Ketamine nasal spray. (Expensive!) I don’t know if it’s become MOH now or not. Any ideas? Trying desperately to carry on and #AlwaysKeepFighting!
The migraineur in your life wants you to know:
Migraine is a real disease.
There is no test for Migraine.
There is no known cause.
There is no cure.
It’s not just a headache.
It’s not a mental illness.
It is possible to have a migraine attack every day.
Bright lights, loud noises, strong smells, certain foods…they really do trigger attacks.
It can take days to recover from a single attack, even once the pain is gone.
It isn’t safe to drive during a migraine attack.
All those meds are not the problem.
Meds don’t always work.
Most doctors are not trained to treat Migraine.
Emergency rooms are not always kind to Migraine patients.
There’s a shortage of qualified doctors.
There will be months, even years of trial and error.
I am sure this all seems unbelievable. What you observe appears confusing at best and frustrating in your weaker moments. I understand. I also love a few people with migraine. Despite living with this disease for over 40 years, I still have moments when I doubt my loved one’s truthfulness. Sometimes I wonder if they “did something” to trigger an attack. I get frustrated when it appears they are not taking their medicine as prescribed. Nothing irritates me more than to hear one of them complain about the pain and then tell me they haven’t done anything to try to abort the attack.
As a wife and mother to migraineurs…
These very behaviors drive me nuts. After all, haven’t they heard my lecture about treating attacks early and aggressively? Don’t they remember the lessons on sleep hygiene, trigger avoidance, keeping a migraine journal, taking medicine as prescribed, and so much more? I get frustrated because they have the opportunity to learn from an advocate any time, day or night. They are the only ones who get to wake me in the middle of the night because of a migraine attack. Not everyone gets that chance. Honestly, my irritation is more about my own ego than about their journey with migraine.
As a migraineur…
I completely understand why someone would choose to risk an attack by intentional exposure to a trigger. Forgetting to take medicine or delaying treatment also makes sense to me. It’s never about not wanting to get better. We get tired of always watching for triggers and setting alarms to take medicine two, sometimes three or four, times a day. It’s exhausting to manage this illness and it’s only made worse knowing that most people won’t believe that we are really sick. Some might understand and still not care. Sometimes we just want to live like a normal, healthy person for just a while. We know it’s an illusion, but we just need a break from being sick. So we pretend to be healthy to distract us from the never-ending hypervigilance of an incurable disease with no known cause.
Yes, we do put on a show.
At some point we may even try to push through the pain in order to participate in an important social event. Try as we might, we just can’t put on that show 24/7. Sooner or later we’re going to break. Often that is at home with our loved ones. If we can’t fall apart with you, then what other option do we have? We know that we are unreliable. This disease has made us that way. We also know that you are irritated, annoyed, and frustrated. We take it all very personally. It’s okay to feel that way – we certainly do. We just want to know that you are still on our team – that you will go to bat for us when we need it most.
We need you.
We need you to learn about this disease. Although we didn’t ask for this, it has taken control of our lives. It would just be so much easier if just one person really understood what we go through. We really want that someone to be you. Living with migraine is so lonely. Having you makes this life brighter and more hopeful. You matter to us, even when it seems like we don’t care about anyone. Please take the time to learn, to understand, and to accept migraine. It will mean the world to us if you do.
10 Ways Migraine is Not “Just a Headache”
By Kerrie Smyres—July 18, 2014
Migraine is a neurological disorder that’s largely inherited and migraine attacks are terribly painful and often disabling. Sadly, though, migraine is frequently dismissed as “just a headache” and migraineurs are told to take an aspirin and get over it. But those of us with migraine aren’t making a big deal over a measly headache. Here are 10 characteristics that separate migraine from a run-of-the-mill headache.
1. Pain Severity
A typical “bad headache” has nothing on the pain of a migraine. Migraine pain is most often described as throbbing or pulsating. Depending on the person, it can feel like one’s head is literally about to explode or collapse on itself. Some people have sharp stabbing or burning pain. And many have some combination of these types of pain.
2. Pain Location
Most people with migraine (59%) have pain on only one side of the head, but many have it on both sides. Those with pain throughout the head can also have more intense pain on one side than the other. The pain can be located anywhere on the head, including in the eyes, sinuses, roof of mouth, ears or face.
3. Pain Worsens With Movement
Migraine pain worsens with movement. Rolling over in bed can be excruciating. Some people will forgo getting up to get medication or water or to go to the bathroom because walking is too painful.
4. Nausea & Vomiting
There’s a common misconception that people vomit because the pain is so bad, but the nausea is a symptom separate from the pain (some people even have migraine attacks with severe nausea and no head pain). 73% of people with migraine have nausea and 29% vomit. Vomiting is never pleasant, but when any movement can worsen the pain, it is nothing short of horrific. Nausea without vomiting is nothing to scoff at. People with chronic migraine can lose unhealthy amounts of weight because they are too nauseated to eat.
5. Sense Hypersensitivity
Lights are too loud, sounds are too loud, odors are too strong and touch is irritating during a migraine. Any of these sensory inputs can actually cause physical pain.
6. So Many Other Symptoms
The primary symptoms people associate with migraine – pain, nausea, vomiting, sense hypersensitivity – are only the most common. Here are a handful of examples from the very long list of possible migraine symptoms: vertigo, difficulty finding words, numbness or tingling in the face or extremities, partial paralysis, frequent urination, brain fog, changes in heart rate and blood pressure. And there’s more, like the list of strange symptoms that Migraine.com readers reported.
7. Migraines Last for Hours or Days
A typical migraine attack lasts between four and 72 hours. The excruciating pain part is only one of four migraine stages. The “migraine hangover,” which happens after the worst of the symptoms pass, also includes a headache and can last for days. With chronic migraine that’s daily, one migraine attack runs into another, with no respite between attacks.
8. OTC Painkillers Are Often Ineffective
Over-the-counter painkillers, like aspirin, acetaminophen (Tylenol) and ibuprofen (Advil) are the go-to treatment for non-migraine headaches. They can be effective for some of people with migraine – especially with added caffeine – but they might as well be Tic-Tacs for most of us. Prescription migraine drugs provide relief for some people, but others get no benefit from any medication.
9. Disability and Disease Burden
During a migraine attack, 91% of people can’t function normally1 and 53.7% report severe impairment or the need for bed rest. The World Health Organization has found that migraine is the most disabling neurological illness by far and it ranks in the top 20 most disabling medical conditions worldwide. WHO also found that “severe continuous migraine” (which some people with chronic migraine experience) is as disabling as quadriplegia.
Even between migraine attacks, a patient isn’t necessarily symptom-free and may experience anxiety about when their next migraine will occur and how severe it will be. Those with chronic migraine may not return to normal neurological function between migraine attacks.
10. The Stigma
Partly because migraine is perceived as “just a headache,” people with migraine face a huge stigma in addition to having disabling symptoms. A study published last year found migraine to be as stigmatized as epilepsy and people with migraine reported more difficulty working than those with epilepsy. Researchers also found that people with chronic migraine face a greater stigma than those with epilepsy or episodic migraine.