The Road So Far – My Journey

Don't You Cry No More!

Don’t You Cry No More

Second night in a row without sleep. Damn this pain! I want to be positive, but it’s so hard when you’re exhausted. Body, mind, and soul. I want a light at the end of the tunnel. A sign that things will get better. Affirmation that I won’t live the rest of my life like this. How much pain can a body handle?! I feel like I’m being tested for something, but I don’t know what. I give! You win! Can we stop now?! Endless cycle of worry, pain, anxiety, panic, side effects, different drugs…… It’s non-forgiving. It hurts! Physically and emotionally. Too tired to think, too painful to get up, too depressed to go on. The struggle is real. wpid-wp-1432820269510.jpeg

What the Internet Says About “Opioids” Says a Lot!

 

What the Internet Says About “Opioids” Says a Lot!

What the Internet Says About “Opioids” Says a Lot!

It’s safe to say that Google’s advanced search algorithms return search results that reflect the dominant content the globe is seeking on any given topic.  So, what do Google search results tell us about what the world thinks when it comes to opioids?

National Pain Report went to Google and asked that very question.  And, here is what Google tells us.

When you type in “opioids” into Google search, the search engine goliath returns 5,730,000 pages of content.  That’s a lot to cull through, so, thanks to Google’s algorithms, the browser makes calculations on which of those 5+ million pages are most relevant to you, the searcher.  Fewer than 15% of people ever even click the “Next” button to see results past the second page, so that’s where we focused our attention.

When we searched “opioids”, there were 24 results (non-advertisements) on the first two pages of Google.  We reviewed each of the results to determine if the content was:

  • “About Pain” (supported or reflected the proper use of opioids for the treatment of pain)
  • “About Abuse” (supported or reflected the misuse of opioids, addiction or death)
  • “About Both” (supported or reflected both proper and improper use of opioids)
  • “About Law” (supported or reflected content about arrests related to opioids)

Google search - opioids 150% of content related to “opioids” exclusively reflects abuse, addiction or death.

Only 4% of content related to “opioids” exclusively reflects the proper use of opioids to treat pain.

92% of content related to “opioids” includes abuse, addiction or death.

Only 46% of content related to “opioids” includes the proper use of opioids to treat pain.

That’s pretty telling.  The “Internet Machine” suggests that when the world thinks about opioids, it’s thinking addiction, abuse and death – not proper and legal use of opioids.  But, does this add up to the real numbers, or does it seem to reflect current trends in media, government and society (or big business)?

According to the CDC, about 12 million Americans abused or were dependent on opioids in 2013.  We used trusted Google to see if we could find the number of people who legally and properly use opioids in an effort to look at the size of this group (and we know it is HUGE).  With that number we would then be able to (however loosely) see if Google is exposing searchers to a reflective point of view on opioids.

Guess what?  That number (how many people legally and properly use opioids) is elusive.  And here’s why.

Ask Google a question, and you reliably get the exact answer you’re searching for, right?

Well, this is what Google tells us when we asked the question, “how many people legally use opioids?”Gogle search - opioids 2

Gogle search - opioids 3

Thanks Google.  You made our point.  We don’t blame you.  But, you are making things worse!

There is a major message that is being driven by government and media.  Just look at the first four Google search results above – all are US Government entities.  And, all of them are related to addiction, misuse, or the drug epidemic, something the government seems to believe is the only thing that opioids do.

And, the next two search results?  Big media with punishing headlines.

The Washington Post article titled, “The legal drug epidemic” leads off with this, “When is this country going to wake up — really wake up — to the catastrophe that prescription opioid painkillers have caused since they came into widespread use in the early 1990s?”  Thanks Google for answering the question about legal use of opioids with this.

CNN says that the FDA approval of a new pill to treat pain is… “Genuinely Frightening.”  When a new cholesterol drug gained FDA approval, CNN’s headline was, “FDA approves second in new class of cholesterol lowering drugs.”  When the FDA approved Addyi, CNN’s headline was, “’Female Viagra’ gets FDA approval.”

So, why is a new pill to treat pain “genuinely frightening?”

It’s because the “message” is that opioids are only about addiction and overdose and not about legal and proper use of important medicines.

Thanks Google.  Thanks government.  Thanks media.  You’re working very well together.

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There are 9 comments for this article
  1. Kristine (Krissy)November 28, 2015 at 12:21 pm

    Dr. Goodwin, you are so right. Many of us are in journalistic positions and we are also pain patients or medical professionals. The maddening part of all this has us reeling with emotions and anger. Thank you for reminding us of our duty to professionalism. And thank you for writing your reply. We need so many of you to do that, but understand the current ramifications.

  2. Jeremy Goodwin, MS, MDNovember 28, 2015 at 9:33 am

    I am a neurologist, adult and pediatric pain and headache specialist, and past chief of the division of pain medicine at a major west coast university medical center, trained at Stanford and Harvard, with degrees in psychology and comparative (neuro) pathology at the undergraduate and graduate level from the University of California at Davis. I am a strong advocate of patients and feel that the current government stance is not supported by the evidence and is totally misguided in its approach,often harming patient care where chronic non cancer pain is concerned even if it does address some legitimate concerns about poor prescription practice, addiction, accidental and deliberate overdose, abuse and misuse of controlled substances. Many of my colleagues who feel similarly are too afraid to speak up because of the perceived threat to their state licenses by the 50 medical boards of the USA. That threat is real snd clinicians have paid the price. The state board attitudes and actions are often not in line with their sanctioned publications that are required reading for all clinicians. California is an excellent example of this.

    The topic of this article is excellent but it’s execution is as poor as that of the 60 minutes ‘exposé aired recently. That was certainly not a documentary. It had s one sided agenda. This article I s one sided too and loses its ‘punch’ because of that.

    This ought to be expanded into a more neutral position showing both sides and without the sarcasm. It would then be more useful in countering misguided governmental agency attacks on how pain is treated.

    There is much judgment and hipocrisy involved on both sides and this needs to be resolved and removed in order for the as yet improperly acquired evidence to be subdivided to analyze very different circumstances, practices and behaviours of disparate groups currently lumped together as one. There is overlap and misinformation as well as disinformation involved by patients, clinicians and scientists alike where the fields of pain and addiction medicine is concerned. This must stop in order for a rational and carefully administered change to take place.

  3. Mark Ibsen MDNovember 27, 2015 at 5:36 pm

    Kristy: I think mono vision only affects depth perception.
    He is clearly blind.
    Just blind.

    Diane:
    “A person convinced against his will
    Is of the same opinion still”
    It is a shame we don’t get the same kind of support from our families as those with cancer.
    That just means we have work to do in sharing our stories.
    Our predicaments.
    Our authentic anguish at being betrayed and abandoned
    That pendulum is already swinging.
    God bless us every one.

  4. BrendaNovember 27, 2015 at 11:52 am

    It is so sad to think in this’enlightened’ time we live in that pain is still a bad word. Tell anyone you have something hurting and their minds automatically go to addiction. And to think someone can’t get pain meds after something as painful as hip or any surgery is asinine. It is abusive. Even our beloved pets get pain meds because the vets don’t want to see them suffer anymore than we do.
    Thats it!! Yes I will go to my vet !! Bet I would be treated better than by my doctor. Anyway I could go on for days, ha! but who has the energy to write let alone read a long post.
    Thanks for listening,,Brenda in Bama….

  5. Steve P.November 27, 2015 at 11:39 am

    I would like to point out that the CDC is equating long-term opioid use to “abuse”, even if you are taking them as prescribed.

    “According to the CDC, about 12 million Americans abused or were dependent on opioids in 2013. “

  6. Cathy CooperNovember 27, 2015 at 10:10 am

    This Article shows the misinformation that is spreading, with no real common sense to counter it. Whether the subject is Opiates, The “War” on whatever is popular this week, it seems to be getting worse. It is truly frightening and disappointing. People watch the “News” go Online, or read Newspapers and think that they are informed. There does not seem to be any real analysis of what is “True” anymore. The DEA has been spreading misinformation for years, leading to a bigger Drug Problem. Apparently they can say whatever they want to justify their funding. They never get called out on the Lies, or have any sort of accountability.
    The Media appears to be giving us the “News” but it is Slanted in the favor of sensationalism, and has an agenda. The Coverage of our current National issues is frightening. It is very one sided, I watched the coverage of the protests against Racism, clearly showing how awful the Protesters were while downplaying the reason for the Protests. People who I though were at least Open Minded, were parroting the theme. We have a System that is functioning by instilling fear, hate and misdirection.
    Our Country seems to be breaking down. The Media Targets a new group every couple of days.
    Chronic Pain patients are just another scapegoat for the problems this country is facing. There is no empathy or common sense because of the labels. In watching some of the Political discourse lately some really ugly themes are emerging. I try to look at the big picture, and ask “who does this benefit?”. Big Insurance, Big Pharma, even Workman’s Comp.
    There is a theme, that it is OK to ignore people in pain, because Mainstream Media, and the Insurance companies have made the subject about “Addiction” . Even when people have direct personal knowledge they ignore it, and it is OK. It is like an alternate universe. It is not just pain patients it is anyone painted as a scapegoat to avoid the real problems. It is deeply disturbing to me the misdirected hatred and rage turned to whatever group. It rings of the Nazi’s. The misinformation campaign is not being questioned. People I though were descent human beings now have an ugly opinion about so many fellow human beings. These ugly opinions are being repeated by the Media, as if they are true. They give credence to the justification for some horrible acts. A certain percentage are actually worked up to violence against the latest target for rage. Immigrants, refugees, the disabled, certain races, it is getting out of control. The ones benefiting form this are the ones profiting off of it, The War Machine, the Pharmaceutical Industry, Insurance are all making Billions while the real issues are ignored, The DEA and other Agencies get more funding if they can scare us. It is getting ugly out there. I am afraid to even mention Chronic Pain, I would be patronized and judged. I am afraid to speak up anymore, it has come back to bite me. I am shocked at the people who believe this nonsense, and there are some that don’t but have to repeat it no matter how ridiculous. There is no accountability in Health Care anymore, I can’t imagine the mindset it takes to ignore the suffering of even Cancer Patients, and people with clearly visible injuries. There is no though to their quality of life, only the fear that they might get addicted! This has led to the justification for not treating people and not having the least shred of empathy. My Mother passed in a Nursing Home and was not even given Acetaminophen after hip surgery. She could not articulate that she was in pain. I know people with serious pain that drank themselves to death, and were afraid they would get addicted to pain meds. That is what their Doctors told them. Death by Alcohol does not seem to register, but it is a horrible drawn out death. They eventually bleed out. This does not get mentioned in their Articles.
    Opiates have been around for thousands of Years, they don’t get Patented, unless they are formulated slightly different. The “new” pain medications have more side effects, minimal effect on pain, but they are Marketed as if they work. The effect of the ignorance and the pursuit of profit has undermined Scientific research. Very few new drugs on the market are significantly better than the old ones, but they are marketed like they are. Some are more dangerous, yet they make Billions for the drug companies. Medicine is so profit driven that there are not many real “Breakthroughs”. There is no real Science behind being applied.
    I used to wonder how do these people sleep at night? I suppose they can, because they believe they are “helping”. Many have contempt for patients, they blame the patients for the lack of re-reimbursement and paperwork generated by the Insurance Companies. The misinformation helps to justify treating people this way. It is not just pain patients either, it is whatever group they blame this week.

  7. Diane SuccioNovember 27, 2015 at 9:18 am

    @Krissy,
    My kids are the same way. My youngest just tells me I’m a junkie. At 1st it hurt but then angered me because of the BS he looks at on Google, etc…. I have up trying to explain anything to him.

  8. Pharmacist SteveNovember 27, 2015 at 8:49 am

    All one has to do is look at this websitehttp://www.dea.gov/pr/news.shtml it lists all the press releases by the DEA’s HQ and 21 district offices… which is then regurgitated by much of the news media. To understand the Google results.
    What you don’t hear about is that every time that you see a BIG DEA drug bust.. that normally represents only 1% of what is actually getting past the DEA and on to our streets for abusers/addicts to us.

    “If you tell a big enough lie and tell it frequently enough, it will be believed.”

    ― Adolf Hitler
    I find it interesting that they are lumping addiction and dependency into the same group.. but.. this follows the recent CDC guidelines that basically states that there is no longer a distinction between addiction and dependency.. everyone who consumes opiates on a long term basis has a OPIATE USE DISORDER..

  9. Kristine (Krissy)November 27, 2015 at 8:42 am

    Good thought to do this, NPR, but I’m not surprised. I recently wrote a small article for you and I sent a link to my brother so he could see it. He sent me back a link on drug addiction. I have to give up trying to convince him what is wrong with me. He doesn’t read about my illness, he only sees the “frightening” thing he calls addiction. I don’t even think he looks at “medically dependent,” because I tried to explain that to him too. He is a highly-intelligent, successful business man who knows a lot about a lot. But he seems to be somewhat blind in one eye.

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An Emotional Support Animal Can Help With Anxiety

An Emotional Support Animal Can Help With Anxiety

According to many Americans with a registered Emotional Support Animal (ESA), the difference between manageable and unmanageable anxiety could be as simple as owning a pet. These animals provide support for emotional disorders including anxiety, depression, post-traumatic stress disorder, and much more by simply being present when their owner becomes emotionally distressed. This aid has helped thousands of Americans overcome their anxieties and stressors by providing a helping hand through stressful situations. But what exactly is an Emotional Support Animal, and does your pet qualify?

What is An Emotional Support Animal?

According to the National Service Animal Registry, “an Emotional Support Animal (ESA) is an animal that, by its very presence, mitigates the emotional or psychological symptoms associated with a handler’s condition or disorder.” Just by being present and sensing the moods they are in—things most animals can do without any special training—these animals soothe their owner’s emotional upsets. They act as a constant friend and companion to their owners and, ultimately, help them cope with their emotional issues, which means a less difficult time coping with day-to-day issues.

This also means that the animal does not have to undergo the same amount of training as a “working” service animal. An ESA is simply there to calm you in anxiety-provoking situations.

Emotional Support Animals vs. Psychiatric Support Animals

Sometimes, a psychiatric disorder can be so severe that it interferes with a person’s basic ability to survive. In this case, an emotional support animal is not enough. That is where Psychiatric Support Animals (PSAs) come in. With more privileges and better training than ESAs, PSAs can perform a variety of tasks that are integral to the survival of their handlers. These tasks include:

YOU MIGHT LIKE THIS:
  • Finding a person or place: These animals are trained to navigate crowded areas using scents to find an exit, a spouse, or a family member during a panic attack.
  • Searching rooms: If a person has anxiety about entering a home or business for fear of being attacked, these animals can search the rooms before the owner enters and make a noise if they find someone.
  • Interrupting or redirecting: An obsessive-compulsive owner can be helped by an animal that recognizes compulsive behaviors and redirects him to more productive behaviors, like brushing his dog.
  • Bringing help: When their owners are having a panic attack, these animals are trained to direct help to their owners, when they are given a certain signal.

Deciding if an ESA or a PSA is right for you is a difficult decision. Talk to your psychiatrist to see which service animal could be right for you.

An Emotional Support Animal can’t go Everywhere

Just like a regular service animal, an Emotional Support Animal is protected under the Americans with Disabilities Act. However, because the need for an ESA is different than a full-fledged service dog who has been trained for months or years, an ESA is not given the exact same permissions a service animal is given. You can take your ESA to fly in the cabin of an aircraft and you can qualify for no-pet housing with your ESA, but your ESA is not allowed in non-pet friendly:

  • Motels
  • Restaurants
  • Taxis
  • Buses
  • Markets
  • Other privately owned businesses

Studies Show That Pets can Improve Your Mental Health

It is almost undisputed fact that pets improve the lives of their owners. This is especially true of owners with mental disorders, like anxiety. Take, for example, these studies:

  • A 2009 study confirmed that having a companion dog improved the anxiety levels of elderly residents of a long term care facility.
  • A study in 1991 found that dogs helped regulate autonomic stress in women.
  • In 2001, a study showed that pet owners had lower heart rates and blood pressure levels and reacted better to psychological and physical stress and recovered quicker from those stresses.

How to get an Emotional Support Animal Letter

Though having your dog, cat, or guinea pig on a flight with you might sound like a wonderful idea, it is not a justification for getting an ESA letter without the need for support. The ESA program in the United States is already under heavy scrutiny for allowing dogs in places where they might not be needed. For example, a person with an ESA letter might try and convince a restaurant owner to let his or her dog into a restaurant even though ESAs are not allowed in those areas. Furthermore, people with allergies who are also on airplanes with ESAs sometimes take issue with an ESA on a plane, causing further discontent.

Before getting an ESA, discuss your options with your psychiatrist or therapist. If an ESA is not absolutely necessary, it would be better not to get one to keep the integrity of the ESA community alive. Conversely, if you need additional assistance for your anxiety, a PSA might be a better option.

Date of original publication: March 18, 2014

Treating “migraine brain” By Tammy Rome—August 1, 2014

As anyone who has ever experienced a migraine will tell you that it is nearly impossible to think clearly or communicate effectively during an attack. Many will attest to residual problems during the postdrome as well as preliminary problems during the prodrome. For patients with chronic migraine, the ability to think and speak coherently can appear to never end. I have even talked to migraineurs who are skeptical of current research that claims there are no lasting cognitive deficits resulting from white matter lesions so often found on the MRIs of long-term patients. To be fair, the research has produced conflicting results. It’s just too soon to know for sure.

What is known is that stress and pain can significantly impact our mental functioning. Our bodies go into a type of “high alert”, favoring action over manners or political correctness. Live with pain and stress long enough and it’s bound to take its toll on your brainpower. Part of the reason may be environmental. I’m not suggesting there is not a biological explanation for migraine-related cognitive impairment. Instead, I’d like to suggest that it is possible to do something to offset that “migraine brain”.

You can learn to compensate for what the mind fails to do (i.e. word loss, forgetfulness, etc.). People with irreversible cognitive damage are often taught how to use specific strategies to compensate for their disabilities. These same strategies are taught to children with ADHD to help them stay on task. They will work equally well for migraineurs.

There is one catch. The professionals who teach these skills are not medical doctors. Most are counselors, therapists, social workers, and psychologists. I realize that some patients have been referred to mental health professionals as a way to “patient-dump” or because their doctors believed their pain was psychosomatic. The topic of mental health can be a very raw subject for a lot of us. If you will indulge me, I would like to try to redeem the reputation of my profession.

The therapies employed focus on compensating for cognitive deficits called Executive Functioning Skills. These are eleven skills that govern our behavior, regulate our emotions, and set and achieve goals. Depending on genetic, organic, and environmental factors we each develop a unique blend of skill strengths and challenges. Apparently, migraines impair our ability to use these skills, too.

Take a look at the list of skills and see if you can identify with any particular skills. You can also download a brief questionnaire to help you discover your strengths. In future posts, I will introduce a variety of strategies you can use to compensate the next time “migraine brain” takes over.

Executive Functioning Skills
Response inhibition: the ability to think before you speak.
Working memory: the ability to remember lists, dates, phone numbers, and tasks.
Emotional control: the ability to prevent your emotions from interfering with a task until it is complete
Sustained attention: the ability to focus on one thing at a task until it is completed
Task initiation: the opposite of procrastination, particularly when the task is unpleasant or boring
Planning & prioritization: the ability to identify and commit to priorities when there are many competing tasks
Organization: the ability to keep things organized and neat
Time management: the ability to accurately estimate the time it takes to complete a task in order to meet a deadline
Goal-directed persistence: the ability to delay pleasure in order to achieve goals
Metacognition: the ability to be objective about oneself accurately
Flexibility: the ability to handle surprises and make adjustments ‘on the fly’.
Read Part 2 in the “Migraine Brain” series – Working Memory Deficits
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.wpid-wp-1432820251735.jpeg

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Being treated like a suspicious character or drug seeker at the pharmacy By The Migraine Girl—November 24, 2015

wpid-fb_img_1424364439689.jpgRecently, I wrote an article for migraine.com about a weird experience I had in the emergency room at a local hospital:  I repeatedly told all the staff I didn’t want morphine, yet it was brought to my room in a vial three times in a row (and eventually I was billed for it even though I never took it).  Rather than being treated like a drug-seeker in need of a high (which is how a lot of you tell me you’ve been treated), they practically foisted a serious narcotic drug on me despite my protestations.

This story should not suggest that I’ve never been treated like a suspicious character, however.  About a decade ago, I had a prescription for Lortab, which my neurologist at the time always wanted me to have filled so I could use it as a rescue med.

It was during this time frame that I went to visit my parents in Florida, and I—of course—forgot my Lortab.  I didn’t anticipate needing it, but I knew that I felt better just knowing it was on hand in case I used up all myRelpax for the week.  My parents lived in Florida for well over a decade, and I don’t think there was one visit to their house where I didn’t end up getting a migraine at least one day, if not the entire trip.  My suspicion has always been that the combination of long car travel (the drive took at least 9 hours), volatile Florida weather systems, and the release of stress (after all, I was usually in “relaxation” mode when visiting my parents’ house as a grownup) is what led to my repeated migraine attacks during my trips to visit.

You can see why I wanted to have my full migraine treatment arsenal at the ready just in case my triptans were used twice in a week and I had to come up with a backup plan to manage the pain and discomfort.

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The pharmacist at the chain grocery store pharmacy could not have improved her side-eye game if she tried: her looks of suspicion were reminiscent of a Saturday morning cartoon villain. I can’t remember how the pharmacy got the prescription, but whatever legal hoops had to be jumped through were jumped through.  Once my hometown pharmacywas called to confirm the existence of not only my prescription but of me, the pharmacist in Florida then called my primary care doctor and my neurologist.  I tried to be patient. I understood that opioid abuse is a serious problem and that doctors and pharmacists are hit up by drug seekers more frequently than I can imagine.

But even after the calls were made, the checkboxes were ticked, and the medication was approved, the pharmacist audibly whispered to her assistant. “I guess we’ll have to just take a risk on this, but something doesn’t feel right.”  Okay. Fine. You think I am shady. You have a right to privately talk with your coworkers at the pharmacy about your reservations giving me these drugs, but really? Right in front of me so I could hear your every word?

The pharmacist finally handed over the bottle of just six Lortab pills (I had told her I’d be fine with just four instead of the usual twenty in a bottle, trying to keep my voice steady and act like a regular person and not an addled drug addict, whatever that behavior might be). As I was bending down to sign the form indicating I was picking up the prescription, she muttered, “I don’t guess we’ll see you here ever again…”

There are many ways to interpret her strange farewell comment, but I have always guessed she thought I was getting away with my feat of acquiring drugs to get high.  Maybe she felt bad about how she’d acted and this comment was the equivalent of tucking her tail between her legs, saying she was sure this experience wasn’t a ringing endorsement of the business where she worked, so why would I be back? Maybe she simply meant she knew I lived in Georgia, not Florida, so wouldn’t have reason to visit again. Who knows? But it sure was the last straw for me.

Instead of speaking up to her and telling her directly how belittled I felt and how frustrating it is to have to jump through eighteen hoops when one truly is a chronic pain sufferer, my eyes welled with tears and I just walked out. If I could’ve kept myself composed, what would I have said?

I suppose my problem is with a lot of people and with a system that is designed to protect patients and caregivers but ends up alienating patients who have a real need for certain prescriptions. I hate how I blush and feel shame when I advocate for care that will help me cope with my illnesses.

Weighing the risks By Tammy Rome—November 22, 2015

 

Migraine patients must often weigh the potential benefits of a given treatment against the potential side effects. It’s a perpetual balancing act to find the right combination of effectiveness and tolerable side effects. It helps to have realistic expectations. It also helps when we are fully informed.

 

Informed Consent

I hear from many patients that their doctors do not disclose the known side effects of a medication when prescribing a new treatment. Some have even had close calls because they did not know what to look for. This is inexcusable. While no one can know exactly how a person might respond to a certain treatment, there are migraine treatments with common side effects. Some are minor, while others can be life-threatening. Every patient has the right to know the most common side effects of each prescribed medication.

 

I understand that doctors don’t want to alarm patients unnecessarily or create a self-fulfilling prophecy. However, failure to disclose the true risks of treatment isn’t the way to build trust. A doctor who won’t tell me the truth about a recommended treatment is a doctor who will lose my trust and my business. I spend way too much time consulting with doctors to waste time with someone I can’t trust.

 

Common migraine treatments and their potential side effects:

Triptans: nausea, tightness of chest, neck, or jaw, rapid heart rate, fatigue, numbness or tingling, burning sensation of the skin10

 

NSAIDs: stomach irritation, heartburn, diarrhea, fluid retention, kidney or liver impairment (rare), increased risk of tinnitus1

 

Ergotamines: drowsiness, headache (during withdrawal), vertigo, dystonia, nausea, vomiting, abdominal pain, numbness and tingling of fingers and toes, muscle pain in arms and legs, weakness in the legs, cardiovascular side effects (hypertension, tachycardia, bradycardia, chest pain, heart valve disease) 3

 

Opioids: risk of physical dependence and psychological addiction, nausea, itching, sedation, constipation, worsening of headache, central sensitization2

 

Anti-epileptics:11, 12

 

Valproic acid, divalproex sodium, sodium valproate: tiredness, dizziness, weight gain, tremor, hair loss, skin rash, nausea, vomiting, GI distress, pancreatitis, liver failure, thrombocytopenia, altered metabolism of sex hormones

Topamax: paresthesia, cognitive slowing, tiredness, psychomotor slowing, drowsiness, word finding difficulties, poor memory and concentration, weight loss, kidney stones, glaucoma

Gabapentin: dizziness, tremor, somnolence, nausea, ataxia

Zonisamide: therapeutic action is similar to Topamax with a lower incidence of side effects

 

Anti-depressants

 

Tricyclics: Dry mouth, blurred vision, constipation, urinary retention, drowsiness, increased appetite, orthostatic hypotension, increased sweating, disorientation or confusion, tremor, increased or irregular heart rate, increase in seizures (in patients who already have seizures), sexual dysfunction5

SSRIs: nausea, nervousness, agitation, restlessness, dizziness, sexual dysfunction, drowsiness, insomnia, weight gain or loss, headache, dry mouth, vomiting, diarrhea, muscle aches, leg cramps, hallucinations, swelling of legs and feet6

SNRIs: nausea, dry mouth, dizziness, excessive sweating, tiredness, difficulty urinating, anxiety or agitation, constipation, insomnia, sexual dysfunction, headache, loss of appetite7

MAOIs: dry mouth, nausea, diarrhea, constipation, headache, drowsiness, insomnia, skin reaction, dizziness, involuntary muscle jerking, low blood pressure, sexual dysfunction, sleep disturbances, weight gain, muscle aches, tingling or numbness, difficulty urinating4

 

Calcium Channel Blockers: constipation, headache, low blood pressure, rapid heart rate, dizziness, rash, fatigue, flushing, nausea, swelling of feet and legs9

 

Beta Blockers: fatigue, cold hands, headache, upset stomach, constipation, diarrhea, dizziness, shortness of breath, insomnia, low sex drive, depressive mood8

 

Not everyone will experience every side effect. Some patients will experience rare or unique side effects. The important thing to remember is to keep communicating with your doctor. Together you can decide the right mix of benefits and risks that work for you. It takes mutual trust and patience to discover what works.

 

It took many years of serious work with my doctor to discover that anti-seizure medicines didn’t work and made me too sleepy, anti-depressants and beta blockers were tolerable but ineffective. Calcium channel blockers worked for cluster headaches, but not so well for migraine. Only Botox worked to stop the near-daily onslaught of migraine attacks. I’m lucky.

 

Some of you are probably still trying to find just the right treatments. Others may be discouraged, and feel like giving up.

 

Realistic expectations

Few patients understand what to expect from a given treatment. The results are typically more subtle and modest than we’d like. Treatment takes longer than we expect to have full effect. And side effects can lessen or worsen over time. The harsh reality about current migraine treatments is that they don’t work nearly as well as we hope. It’s all about the numbers.

 

Fifty percent

50% is the “magic” number. A treatment is considered successful if there is at least a 50% reduction in either the frequency or severity of attacks. For most treatments to be considered effective, at least 50% of patients who use it will get a 50% reduction in either frequency or severity. For an episodic migraineur with 4 attacks per month, an effective treatment results in only 2 attacks per month. That sounds wonderful. Now let’s think about chronic migraine. A patient with 15 or more headache days in a month might see a 50% reduction in severity, improved responsiveness to acute treatment, but still experience just as many attacks. Patients who experience chronic daily headache might see a 50% reduction in frequency, but they are still facing down migraine attacks more than half the time.

 

Ninety days

90 days is the minimum time a treatment should be used before deciding it isn’t effective. But there’s a catch. Let’s say your doctor starts you on 25 mg of Topamax. That’s a medication commonly used to prevent migraine. The maximum effective dose can be 200 mg or more daily. So unless your doctor gives you specific instructions on how to titrate up safely, you might be faced with 90 days at each dose change. If you increase by 25 mg every 90 days, it might take almost two years to determine if Topamax is the right treatment for you. Patience and persistence are essential to endure medication trials.

 

Even though most of my family and friends are well educated about migraine, they still struggle to understand why I keep getting attacks. It isn’t unusual to hear, “I thought you said Botox was working,” when someone finds out I am having a migraine attack.

 

It is human nature to believe that an effective medicine is one that eliminates all symptoms. Living with an incurable illness doesn’t afford us that luxury. Medicines and other treatments can reduce the impact of symptoms, but certainly won’t eliminate them all. Choosing a migraine treatment plan is a never-ending series of trade-offs.

 

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.

 

 

 

Turn The Page

So, I saw my psychologist yesterday. I see her regularly to deal with my depression and anxiety in relation to my medical issues. I hadn’t seen her since my appeal hearing and was anxious to tell her I had gotten a favorable decision. She said “Well, you should be a lot less stressed.” I should be. But I’m not. The hearing was just one step in the entire process. Now I have to wait for an “award” letter. This will explain my benefits and when they should start. According to Social Security, this could be anywhere from 30-90 business days. I am now eligible for Medicare; thankfully, but not sure when that will go into effect. I don’t have the money for December’s medical insurance and have a huge rate increase starting in January 2016. I have been threatened with legal action by 2 collection agencies for overdue medical bills. I’ve explained my situation and basically been told that it’s “not their problem.” There’s that empathy I see everywhere. (holds up sarcasm sign) So, no. I’m not less stressed. I’m relieved knowing my situation will improve at some point. Just not sure when and what will happen until then. Oh well, life goes on. Always Keep Fighting! wpid-wp-1422496248237.jpeg