Voices of pain patients


LouisVA says:
February 23, 2015 at 11:23 am

Hello Kurt, I have read your article with great interest because I am on opioid therapy and am taking the same dose for 4.5 years and have never needed an increased dose. A little background – I had a lot of pain as a child then it let up during my mid-teens, presumably when the growth & sex hormones kicked in. The pain returned in my early 20s (early 1970s) and of course could find no real help. I was diagnosed with fibro in the 1990s and by 1997, the pain was suicidal. I found some local doctors that would treat with small opioid doses but was still in agony.

Finally, I went to a nationally known pain specialist, Dr. Forest Tennant (see: http://www.foresttennant.com/index.html). He found by genetic testing that due to a genetic defect, I am a poor metabolizer. Not being afraid of opioids, the good doctor started slowly titrating me upward until I was comfortable. Now, I am on an ultra-high-dose therapy (2000 mg. morphine equiv. per day) and since age 60 to present (age 65 next month), I have enjoyed the highest quality of life since adulthood. The most remarkable thing is I have stayed comfortable for 4.5 years on the same dose that he initially titrated me to about 4 and a half years ago.

Gee, it’s so nice to hear from a patient who received help from Dr. Tennant — especially since I was one of the patients who didn’t.

Mary Ellen says:
February 23, 2015 at 1:09 pm

As a chronic pain warrior myself, I know a lot about pain tolerance. My doctors and pharmacists and family all have developed tolerance for my pain! It’s the “so what? You’re always in pain.” Attitude that burns my toast.

After being on doctor ordered OxyContin for five years, I took myself off. It was hell, but I couldn’t think on it and felt like I was walking in jello. And people stole my meds and broke into my house. When the detective told me to go live in a nursing home this ADAPTer had to act.
No health insurance meant I had to not go to the hospital. I doubled up on blood pressure med and muscle relaxers. I envisioned life better and the pain was amazing and auditory and visual holucinations (I can have it but not spell it) were entertaining. They actually made me know I was going to make it.

My doctor didn’t think I could do it because he had never heard of it or seen it. I got myself off and, of course, still had treatable pain. I have been on low dose Percocet for years. And I have a huge blessing. A bone previously fractured and healed “backwards” only hurts when my brain wants more. So, I learned to take myself off just the Percocet for a few days to reset my pain. I’m 61 and this has worked for me for 8 years.

A doctor who has never heard of or seen a pain patient stop taking Oxy?  Where does this doctor practice?

And this patient didn’t re-set her pain; she re-set her opioid tolerance.  It’s something that medical cannabis patients do also — stop the drug for a day or two so that it will become more effective.  Of course, ceasing the use of cannabis for a day or two is sooooooo much easier than stopping opioids.

Hey VA: “Get Your Act Together”


I moved from North Carolina to California a year ago and decided to try the highly rated VA Hospital near my new home. Initially, I had no trouble getting the care I needed. Once I was an established patient, though, I was officially diagnosed with PTSD and was referred to the Pain Management Clinic…

The VA had recently decreed that veterans with PTSD could not be on long-term opiate therapy and had set a ceiling for the dosage…

Click to access 791-notes.pdf

Opioids in Chronic Pain and PTSD:  Liability or Potential Therapy?

After trauma, patients (pediatric burn victims, adult trauma victims, Iraq soldiers) administered morphine within 48 hours were significantly less likely to develop PTSD and/or had less severe PTSD symptoms.  (Holbrook et al., 2010; Saxe, 2001; Bryant, 2009)

Dick Cavett: Robin Williams Won’t Be the Last Suicidal Star


His death recalled a moment with him years ago in a small club. He came off stage after bringing a cheering audience to its feet. “Isn’t it funny how I can bring great happiness to all these people,” he said. “But not to myself.”

Robin and I agreed once that it’s galling to hear — when you’re “in it” — the question: “What have you got to be depressed about?” The great British actor and comedian, Stephen Fry, a fellow-sufferer, replies “And what have you got to have asthma about?

Brainy quotes on Depression

“Depression is the inability to construct a future.”  Rollo May

“Once upon a time my political opponents honored me as possessing the fabulous intellectual and economic power by which I created a worldwide depression all by myself.”  Herbert Hoover

“The five stages – denial, anger, bargaining, depression, and acceptance – are a part of the framework that makes up our learning to live with the one we lost. They are tools to help us frame and identify what we may be feeling. But they are not stops on some linear timeline in grief.”  Elisabeth Kubler-Ross

“Here is the tragedy: when you are the victim of depression, not only do you feel utterly helpless and abandoned by the world, you also know that very few people can understand, or even begin to believe, that life can be this painful. There is nothing I can think of that is quite as isolating as this.”  Giles Andreae

“Get away from the place that makes you feel comfortable with your depression. The reality is it’s never as bad as the insanity you’ve created in your head.”  Ben Huh  (What a great last name.)

“Scientists have demonstrated that dramatic, positive changes can occur in our lives as a direct result of facing an extreme challenge – whether it’s coping with a serious illness, daring to quit smoking, or dealing with depression. Researchers call this ‘post-traumatic growth.'”  Jane McGonigal

“Yes, I suffer terribly from depression. I have to work at being happy, it’s not my natural instinct. My natural instinct is, if something wonderful happens, to throw water in my own face.”  Fannie Flagg

Vyvanse for binge eating disorder


Shire is pushing full steam ahead to get the word out on binge eating disorder (BED), the new indication it snagged for blockbuster Vyvanse last month…

But all of these activities worry some medical professionals, considering that Vyvanse is essentially an amphetamine, The New York Times notes. And amphetamines have a long history of triggering abuse in overweight patients, a category that describes about 80% of binge-eaters, according to Shire–though the company notes that Vyvanse shouldn’t be used as a weight loss or obesity treatment…

“Now we have another reason for the public to learn about the glories of amphetamine–it’s very worrisome,” one behavioral pediatrician told the paper. The chief medical officer of Phoenix House, a drug treatment organization, remarked that there are “so many reasons to be concerned about this.”

What, no mention of this person’s name?  Could that be… Mr. Kolodny?

Shire’s track record isn’t helping much. Last fall, the pharma shelled out $56.6 million to settle federal charges that it crossed the line while promoting Vyvanse, the Times notes. Among the claims was that Shire played down Vyvanse’s addiction potential–an allegation the company denies…

Turning to Twitter, doc launches campaign against cancer drug prices


Dr. Hagop Kantarjian from Houston, TX-based MD Anderson Cancer Center is starting an online petition with patients and physicians, hoping to gather 1 million signatures to push Congress and the White House to reduce the price of cancer meds, The Wall Street Journal’s Pharmalot blog reports…

Top 10 drug brands by payments to doctors

The only medication that could be used for pain on this list is Humira.  But I think it’s concerning that two of the drugs on this list are for schizophrenia.  These kinds of drugs are often used off-label, sometimes to treat pain.  Even more concerning is how often these very strong drugs are prescribed to children.