Judge Overturns Massachusetts Ban on Zohydro - National Pain Report
Apparently, I missed this while sick with an eight day stomach bug, but in case you've missed it Zohydro AND compounded hydrocodone are both available in Massachusetts. The judge set a powerful precedent, and I'd personally thank her for using her brain and not giving in to opiophobic propaganda and paranoia.
Study Finds Chinese Herb More Effective in Treating Rheumatoid Arthritis - National Pain Report
The herb is more effective than methotrexate, but easier on the body. When combined, the herb & methotrexate are even more effective than either individually.
Steve
Federal Judge Asked to Lift Ban on Zohydro - National Pain Report
Excerpt:
"There was no indication when federal Judge Rya Zobel would rule on the case. Last week Zobel indicated she might overturn the ban, saying,“I think that, frankly, the governor is out of line on this.”"
My Story: Feeling Like a Criminal - National Pain Report
Thanks to the same laws that make this person feel like a criminal, I am forced to do without cannabis. Instead, I get ultra expensive dronabinol (generic Marinol; CIII), which doesn't work as well, has more side effects, makes you "higher" than cannabis. Herbal cannabis has also been shown to kill glioma cells. Inoperable gliomas, like mine, have few other treatment options.
-Steve
Over-the-Counter Pain Relievers Linked to Heart Problems - National Pain Report
http://bit.ly/1ezpZcn
Daily Kos :: More evidence Obamacare is working to provide the health care people need
http://bit.ly/1eeH5vq
"Bang-up statistics for rates of insurance under Obamacare are one thing, but for the truly human benefit of the law, you have to look deeper. And here's an excellent example: Actual health care, in the form of prescription drugs, is getting to the people who need it."
The early data isn't showing a lot of birth control, instead it is showing treatment for life-threatening illnesses, like cancer, HIV/AIDS, intractable pain, rheumatoid arthritis, lupus, other rheumatologic illnesses & autoimmune diseases, multiple sclerosis, and other neurological illnesses. Although inadequate (& wasteful, thanks to the Republican solution of including private insurers), the ACA has had meaningful impact on the lives of so many people.
So many more could be helped (for a lot less money) if we could switch to single payer and cut out the middle men. This would also avoid the complication and confusion that had plagued HeritageCare (aka ObamaCare).
Remember, HeritageCare (private insurers getting tax dollars to cover lie income people) was the Heritage Foundation's "solution" to single payer & the public option. They're fighting their own creation.
Obamacare Headline in Rural Arkansas- Daily Kos
http://bit.ly/1eeDqxH
"In a real life example of how Obamacare is changing everything, our local newspaper ran an article about the closing of the 9th Street Ministry Medical Clinic.
"It was announced last week that 9th Street Ministries will be concluding their medical clinic mission, which had been ongoing monthly to offer free medical services to those in need since first starting in 1998. The final day for the medical clinic will be Thursday, April 24, and that will conclude the mission that has been in place for almost 16 years."
The article tells how the ministry has been operating once a month for years to give people healthcare on a first come, first served basis. This care was provided by volunteers. My mother actually volunteered at the clinic and they would see as many as 300 a day. Many of these people would wait all day for the chance to see a doctor. Most of the patients were people who could not afford to see a doctor, but were not eligible for Medicaid or Medicare. Why would they close this clinic down?
"We’ve gone from seeing around 300 people a month on a regular basis, but as people were enrolling in Obamacare, the numbers we were seeing have dropped. We were down to 80 people that came through the medical clinic in February, all the way down to three people at the medical clinic in March. Our services won’t be needed anymore, and this will conclude our mission.”
We live in one of the most conservative places in Arkansas.
The Repub's want to tell those people that once a month waiting all day for a chance to see a doctor was good enough.
Thankfully, President Obama did not think so."
~~~~~
The "Tip Jar" (comments) are worth reading too.
I see that MI has enrolled over 50K ...
... in Medicaid since it expanded on 4/1. I think the "single payer" option that is Medicaid has been the most important effect of the whole ACA. Red state Guvs and legislators who have been blocking expansion are going to be facing an enraged public all the way up until election day this November and they will pay a price. Polling is showing incumbent Guvs in GA and Kansas behind in their reelections! People love their Obamacare.
Apr 9, 7:16a- Reinvented Daddy
People find it difficult to believe that THEIR representatives would be out to hurt them. Then, after a while, they remember their daddy's razor strop and they ask whether those whippings really hurt daddy more than it hurt them.
After a while, some people don't deserve the benefit of the doubt."
Apr 9, 7:30a- Hannah
Drug Maker Seeks to Block Ban on Zohydro - National Pain Report
http://bit.ly/1ivz8zc
I know that Zogenix will get a lot of crap from the anti-opioid lobby (aka rehab business) for this, but I'm glad that they're protecting Massachusetts CP/IP patients and challenging this drastic overreach.
Steve
To clarify... The government is advocating it's use in pain patients who are BELIEVED to be in overdose. The problem is that most people can't tell an overdose from fatigue or the flu. Intractable pain patients on opioids are usually opioid tolerant and naloxone/Narcan/Evzio causes abrupt withdrawal. In a patient who actually needs opioids (intractable pain patient, not drug addict), this abrupt withdrawal can trigger a heart attack.
This is unnecessary because...
If pain patient (or addict) overdoses, the symptom is respiratory depression, which can be overcome with oxygen, BiPAP, and/or CPR. This product is intended to reverse believed overdose while waiting for an ambulance, but CPR has been fine for years.
Naloxone/Narcan/Evzio reverses the opioids, which is fine for an opioid-naive patient, but this device is only for opioid tolerance patients.
With so many family members not understanding us and many being called druggies, would you really want them wielding an opioid blocker? I can easily see easy access to naloxone leading to pain patients (& addicts) being forcefully injected with naloxone against their will to "prove" to them that they're an addict (those people never understand the different being addiction and tolerance & physical dependence).
This product should only be prescribed directly to the addict or pain patient, not "concerned family members" WITH THEIR PERMISSION. It should be treated like Antabuse (giving to someone without permission is forbidden and legally considered poisoning, and carries a black box warning).
Steve
A Pained Life: Medication Jeopardy - National Pain Report
"I was concerned about being able to get methadone when I returned home to New York City.
“My mentor is there. He’ll give you the prescriptions. Don’t worry,” Friedman said.
Unfortunately, he was wrong.
When I told the doctor, “Dr. Friedman told me you would write the methadone prescriptions for me,” he stood up, said he would not, ended the appointment, and sent me on my way – with no prescription or instructions about stopping the drug."
My comments:
~~~~~ Comment #1 ~~~~~
I was cold turkeyed from methadone (although I had oxycodone, which helped with the mu-opioid activity, but not kappa-opioid or NMDA).
Methadone it's cheap and effective, but it is also misunderstood because of a few overdoses caused by uneducated physicians. Methadone should NEVER be increased more than once every 5-7 days. Other opioids can be increased every few days or even every few hours. If a doctor increases methadone as often as they increase oxycodone, oxymorphone, morphine, or fentanyl, the patient could overdose.
There is a irrational fear surrounding methadone and because it is about $10/month, there's no incentive for drug companies to spend money dispelling those myths. Some brand name drug companies will scare doctors away from methadone to boost sales of OxyContin (oxycodone ER - major culprit), Kadian (12 hr morphine ER), Avinza (24 hour morphine ER), Exalgo (24 hr hydromorphone ER), Opana ER (oxymorphone ER), and, now, Zohydro (12 hr hydrocodone ER).
Sorry, I don't mean to sound like a conspiracy theorist.
Duragesic/fentanyl patches 400mcg/hr have no effect on my neuropathic leg pain, but low dose methadone (even 5mg/day) can have huge effects.
Methadone is uniquely effective because it it's not a pure mu-opioid (like morphine, oxycodone, fentanyl, sufentanil, alfentanil/Alfenta, oxymorphone, hydrocodone, hydromorphone, codeine, and remifentanil). Methadone is a mu-opioid, but it's also a kappa-opioid, an NMDA receptor antagonist. Methadone is ideal for nerve pain, but it is also effective for back pain and cancer pain.
Steve
~~~~~end~~~~~
~~~~~ Comment # 2 ~~~~~
Robert is correct, this is medical malpractice.
Untreated and under treated intractable pain can and do kill, usually through cardiac over-stimulation and various changes in the cardiac, pituitary, and adrenal systems. Dr. Forest Tennant explains it best in 'The Intractable Pain Patients' Handbook for Survival', which is (legally) available for free.
http://bit.ly/PainGuidePDF
Dennis is correct, pain patients need to be given a voice among those who regulate pain treatment. To those who lost kids, I'm sorry, but you kids was an addict who broke the law and took powerful medications without any regard for the directions. These kids toss random points in a "candy dish" and swallow handfuls, you can't regulate that kind of stupidity. We pain patients are completely different from the drug abusers who make our lives hell.
~~~~~end~~~~~
Steve
A Pained Life: Seeing Failure as Success - National Pain Report
..."I remember reading a note one of my first doctors had written: “She is being victimized by her pain.”
I did not understand what he meant at the time. Now I get it. I feel a victim, not only of the pain, but of the lack of treatment options for it."...
..."I looked up the definition of victim online: “A person or thing that suffers harm, death, etc… from some adverse act, circumstance, etc.”
This added disclaimer surprised me:
“Using the word victim or victims in relation to chronic illness or disability is often considered demeaning and disempowering. Alternative phrases such as who experiences, who has been diagnosed with, or simply with and then the name of the disability or illness, can be used instead.”
But we are victims. Of pain that often controls our lives. Of a War on Drugs that we need to help us live. Without those drugs the pain can be so overwhelming that death can be seen as preferable, and for way too many of us, has been.
Changing the way we say it, “I am not a victim of my pain, I experience chronic pain,” does not change the experience of being victimized.
So maybe it is time to turn the equation around.
If we can look at each failure as bringing us closer to being helped, then we are no longer victims. We become warriors. And each new treatment brings us closer to the one where we just may prevail."... (if it is legal & not under attack - don't hold your breath for Sativex or opioids).
Steve
My Story: Life with Interstitial Cystitis - National Pain Report
http://bit.ly/1gXa5Yn
This is the story of a woman afflicted with a Interstitial Cystitis due to physician malpractice. She was promised that the pain would subside, but it didn't. She has to go to the bathroom 60-70 times a day, but was denied disability.
She is a fellow pain warrior and my thoughts are with her. Hopefully, she will receive her disability soon and not lose even more than the intractable pain and IC have taken from her already.
Steve
For those who don't know, I live in Pennsylvania, a very un-friendly state when it comes to pain control (can't find a pain doc to manage an intrathecal pump and we have no medical cannabis).
Anyway, it's raining today and my pain is flaring. What many people do not know is that it is not the rain that caused flare ups (at least not for me, or my wife). If it rained for 40 days and 40 nights, I would be fine days 3-39 (days 1, 2, 40, & 41 would be the issue). For me, the changes in the weather (& barometric pressure) are the issue. Every time it rains, I get hit twice, once when the storm system rolls in and again when the storm system rolls back out. This double whammy makes me loathe Pennsylvania's weather.
I've also read that some parts of the country are experiencing extreme weather (tornadoes). To all of them, I wish you good luck & safety.
I would love to read about your various experiences with the weather, including extreme weather conditions. Please leave any stories in the comment section.
Steve
Massachusetts Ban on Zohydro a Slippery Slope - National Pain Report
Okay, so the title seems a little silly, but today isn't just April Fools Day, it is also the 6th anniversary of my cancer diagnosis.
I've had symptoms for over a decade, and my first brain MRI on January 17, 2006 (8.25 years ago), where they found an area of increased signal in the periaqueductal gray matter of the Pons of the brainstem. My PCP called me at 8:46PM to tell me that I had a cyst, an infection, a tumor, or scar tissue from when I was assaulted by my grandfather 5 months earlier (the day before school started).
On April 1, 2008, I had my first appointment with Arnold G. Salotto MD, my neurosurgeon, who taught me how to read the MRIs and diagnosed me with DIPA (Diffuse Intrinsic Pontine Astrocytoma), a subset of DIPG (Diffuse Intrinsic Pontine Glioma). This is a childhood cancer that is typically fatal within 6-12 months of diagnosis (with treatment) and my tumor headaches started years before the first MRI and intensified 7-8 months before the first MRI (delayed diagnosis).
It is nothing short of a miracle that I'm still alive today, especially since I'm ineligible for or uncomfortable with conventional treatments, such as:
* IMRT - most precise form of external beam radiation using electrons (X-ray)
* radiation pellets (can't be safely placed)
* Proton therapy - external beam radiation using protons (better than X-ray & safer) -closest hospital is in Philadelphia (~200 miles away)
* chemotherapy (oncologist rejected)
* surgery (to dangerous, even a biopsy isn't safe)
* Novocure NovoTTF-100A (can't be used on brainstem)
Cannabinoids, and maybe melatonin, have teamed up with my immune system to significantly slow the growth of the tumor. I wouldn't be alive today without delta-9-tetrahydrocannabinol (THC), aka dronabinol/Marinol.
With pain destroying our lives, it's important to celebrate the good things, like a 6 year old 6-12 month prognosis.
My daughter turned six back in January and finishes kindergarten in June (and they're having her skip a grade) and I get to see it because of cannabis and my abnormally long survival time.
Steve M
Pain-Topics News/Research UPDATES: The “Integrative Pain Management” Controversy
http://bit.ly/1mGX5t2
Pain-Topics.org has removed or moved Overcoming Opiophobia from its server, so bit.ly/Opiophobia is now a dead link. Bit.ly will not allow me to change the url that bit.ly/Opiophobia points to, but since bit.ly links are case sensitive I have created a new mini-URL to link to the file using a permanent Google Docs file. Overcoming Opiophobia is now available via http://bit.ly/opiophobia
I apologize for want confusion that this has caused.
Steve
Daily Kos :: GOP's Obamacare spite means death toll for red states
"Yet as damaging as that uncertainty and chaos has been, the Republican Party's scorched-earth opposition to Obamacare is producing something far worse: a body count. That's not hyperbole, but a grim reality. Due to what might be the greatest act of political spite in modern American history, Republicans will needlessly leave millions of people uninsured, many hospitals on the edge of financial ruin and thousands of Americans dead, mostly in the states the GOP itself controls."
17,000 deaths from rejected Medicaid expansion
Ask the Pharmacist: Why Am I Being Denied a Pain Medication? - National Pain Report
I know what you're thinking, another link, really? Unfortunately, I haven't felt up to posting any personal posts. Fortunately, I've been running across quote a few great articles.
Steve
My Story: Politicians Should Stop Opposing Medical Marijuana - National Pain Report
Report Claims Drug Testing for Painkillers Motivated by Profit - National Pain Report
http://bit.ly/1rUK2oW
"...between 2000 and 2009 the number of all Medicare laboratory services increased by about 48%, while the number of drug tests conducted in physicians’ offices increased over 3,000,000 percent ....
An estimated 116 million Americans suffer from acute and chronic pain. Many doctors who treat chronic pain patients require them to submit to random drug screens as a condition for receiving prescription pain medications. The stated rationale is to prevent misuse and possible addiction, but Collen claims there is little evidence to support the value of drug tests on people with chronic pain.
“It would be naive to say that money has not played a role in the dramatic increase in drug testing as noted in the paper,” Collen wrote in an email to American News Report. “I believe profits drove drug testing behavior and behavior drove acceptance of the procedure before there was sufficient evidence of efficacy. Now physicians may be drug testing patients because others are doing it.”
Until recently doctors could charge Medicare and private insurers up to $225 for a urine drug test that cost them a little over $20. Medicare changed its reimbursement rules after the government found evidence that some laboratories and doctors were using questionable billing practices.
Ameritox, a national laboratory that provides drug testing, agreed to pay $16.3 million in fines in 2010 to settle claims that it gave kickbacks to doctors for using its labs. A whistleblower lawsuit filed by an Ameritox sales representative alleged the company made cash payments to physicians for drug test referrals and also placed personnel in doctors’ offices to collect urine samples for drug tests that were then billed to Medicare. Ameritox says its business practices have changed since the settlement. Another testing company, Calloway Laboratories, was indicted by a Massachusetts grand jury for an “extensive” kickback scheme for doctors. Calloway has denied the charges.
Concern about a “lack of boundaries” in drug test billing led the American Academy of Pain Medicine (AAPM) to warn its members about increased government oversight. “The use of clinical drug tests in pain management has become an area ripe for the submission of fraudulent and abusive claims for reimbursement and rampant ‘overutilization’ of laboratory services,” warned Jennifer Bolden, a former federal prosecutor who is a special counsel to the AAPM."
My doctor stopped "random" drug testing on both my wife and myself, when they found out that it wasn't covered and, as Medicaid recipients, they couldn't bill either of us.
Steve M
American Pain Rights Act Petition
http://bit.ly/1dGT7h6
My comment:
I'm a cancer patient with severe intractable pain. Because of the rampant Opiophobia caused by the epidemic of anti-opioid propaganda, I can no longer get adequate treatment. Pain patients aren't addicts and we aren't criminals, we didn't choose to live in pain 24/7. We are treated as guilty the moment we walk into the doctor's office, hospital, or pharmacy. Addiction among chronic pain patients is extremely rare (3-7 patients per thousand). Those of its who take our medications as prescribed should NEVER been punished because an minority of people abuse these essential medications.
Drug abusers will get opioids no matter what. These opiophobic policies harm pain patients, but have no effect on addicts other than to raise street prices on pharmaceutical opioids and force them to switch to heroin (diacetylmorphine/diamorphine), which is much more dangerous because they cannot accurately determine dose. There are even a subset of extremely desperate pain patients (mostly in Florida) who have resorted to heroin for pain relief. No one should have to turn to the streets for medical care.
For intractable pain patients, like myself, there is no alternative to opioids. Before doctors prescribe opioids, they make us try dozens of other treatments (with serious side effects).
Opioids aren't nearly as dangerous as NSAIDs or acetaminophen, each of which kill more people each year than all opioids combined.
Overcoming Opiophobia
http://bit.ly/Opiophobia
The Intractable Pain Patients' Handbook for Survival
http://bit.ly/PainGuidePDF
Pain-Topics News/Research UPDATES: More Evidence That Naltrexone Aids Fibromyalgia
Pain-Topics News/Research UPDATES: Is 5,000 IU/Day of Vitamin D Enough for Pain?
http://bit.ly/1i2DRrV
Pain-Topics News/Research UPDATES: The 6 Worst Words in Evidence-Based Medicine
http://bit.ly/1i2DkpZ
"There is no evidence to suggest that jumping from an airplane in flight without a parachute as compared with using a parachute is fatal."
Purdue Developing Hydrocodone Drug to Rival Zohydro - National Pain Report
This new formulation (HydroContin?) is an improvement because it is once daily, but it will be abuse deterrent, likely the same abuse deterrent as the new OxyContin, which many pain patients cannot absorb.
Be sure to read:
Drug Maker Blames ‘Misinformation’ for Zohydro Controversy
http://bit.ly/P30Dri
Drug Maker Blames ‘Misinformation’ for Zohydro Controversy - National Pain Report
Excerpt:
...“Without justification, inaccurate allegations have been made that Zogenix paid a university to arrange meetings with the FDA to secure approval of Zohydro ER,” wrote Hawley.
“The university in question has declared for the record that, in the meetings it arranged with FDA officials, no representation from Zogenix was present, nor was the company or its products ever discussed. In fact, Zogenix did not even exist as a company at the time of these meetings.”
Some pain patients who want access to Zohydro have told National Pain Report that it is Sen. Manchin who has a conflict of interest.
The senator’s daughter, Heather Bresch, is the CEO of Mylan Inc. (NASDAQ:MYL) a Pittsburgh-based pharmaceutical company that is one of the largest generic drug manufacturers in the world. One of Mylan’s top-selling drugs is a hydrocodone product containing acetaminophen.
Campaign records show that political action committees or individuals associated with Mylan have donated $127,000 to Manchin in the last five years — making Mylan the senator’s second largest corporate contributor...
Massachusetts Declares Health Emergency, Bans Zohydro - National Pain Report
http://bit.ly/1h4v1rg
This is totally unacceptable, and bit entirely legal. This will not have any effect on drug abuse (except, maybe, killing more via heroin overdose), but it will hurt pain patients.
We need to stop allowing these anti-opioid propagandists control the agenda.
Why Is a Florida Man Facing Life in Prison For Lending a Friend His Car and Going to Sleep? | The Nation
http://bit.ly/O1RZbz
Totally off-topic, but injustice is injustice, whether felony murder rule or going after physicians who treat pain.
FDA Approves First Device to Prevent Migraines - National Pain Report
http://bit.ly/1eWKqO2
Feds Investigate Walgreens Over Privacy Concerns - National Pain Report
http://bit.ly/1pefSuh
Anything to different from the discrimination of CP/IP patients.
Drug Maker Blames ‘Misinformation’ for Zohydro Controversy - National Pain Report
http://bit.ly/1peed85
FDA Hears From Fibromyalgia Patients - National Pain Report
Don't forget to read the comments.
Drugs for Fibromyalgia: How Good Are They?- National Pain Report
http://bit.ly/O4OAth
Lyrica provides relief for 10% of patients, Cymbalta 6%, and Savella 8-10%.
Technically, 1 in 10 patients reporting significant relief from Lyrica/pregabalin is better than placebo, which is all that the FDA requires for approval (the major flaw in the FDA approval process).
"In the case of Lyrica, randomized controlled trials have shown that doses of 600 mg daily produce drowsiness in 15-20% and dizziness in 27% to 46%.
Other side effects include dry mouth, weight gain, peripheral oedema (swelling). In another important review, it was found that treatment was discontinued due to adverse events in one out of 4 patients."
Fibromyalgia patients deserve pain medication, not placebos that cause massive weight gain and fatigue.
For those that get relief from them, opioids (as well as Xyrem/sodium oxybate) should be made available to them. Enough of these useless antidepressants. Enough of making Fibromyalgia patients feel bad because they don't respond to these useless drugs. Enough of shaming Fibromyalgia victims for requiring opioids.
Chronic & Intractable pain victims are not addicts and we are not criminals. We shouldn't be treated any different from a diabetic refilling his insulin, metformin, Actos, or Byetta.
It's bad enough that opioids are withheld from most chronic pain patients, especially Fibromyalgia patients, but to give them drugs that are useless for their pain condition (they might help for depression), all while telling them that the drugs are specifically approved for their condition, is inhumane and cruel.
-Steve
"In summary, a minority of patients will report substantial benefit with Lyrica, and more will have moderate . Many will have no or trivial benefit, or will discontinue the drug because of adverse events."
“Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less, in human beings of whom they know nothing.”
"Those who have been awarded a diagnosis of fibromyalgia find themselves in a “double bind.”
On the one hand, the very diagnosis can arouse disbelief at all levels of society and, on the other hand, the available drugs afford most of them little, if any, relief of pain."
It's unprecedented, but the media has finally realized that the patients' perspective in the debate over prescription opioids belongs in the article, not the comments section.
I urge you to read and pass along this well written, well thought out article...
Why are patients shut out of the debate over prescription pain medicine? - The Washington Post
Fibromyalgia Mystery Finally Solved!
Researchers Find Main Source of Pain in Blood Vessels
This is a more laymen-friendly version of an article from several months ago that explains that Fibromyalgia isn't Psychiatric, but neuropathic. The pain is the result of abnormal nerve fibers, which improperly manage the blood vessels. This article focuses on the fact that Fibromyalgia is not Psychiatric, but I'll repost the more in depth article later.
The worst part is that, thanks to the War on Drugs, War on Doctors, and the newest war, the War on Patients, Fibromyalgia patients will still be given useless SSRIs (Prozac/fluoxetine, Paxil/paroxetine, Zoloft/sertraline, etcetera), SSNRIs (Cymbalta/duloxetine, Effexor/venlafaxine, Pristiq/desvenlafaxine, tramadol/Ultram/Ryzolt, Nucynta/tapentadol, Savella/milnacipran, etcetera), and mood stabilizers (antipsychotics & anti-epileptics; gabapentin/Neurontin/Gralise, Lyrica/pregabalin, Lamictal, Abilify/aripiprazole, Seroquel, etcetera). Unfortunately, antiopioid propaganda and the DEA are preventing most physicians from prescribing pain medications for pain. Opioids are the safest (especially in the longterm), most efficacious (with adequate dosing) solution for any chronic pain condition.
Remember, acetaminophen/paracetamol/Tylenol alone kills more people than all opioids combined. NSAIDs aren't as deadly as acetaminophen/paracetamol, but they're still more deadly than opioids. Actually, even diacetylmorphine/diamorphine/Heroin rarely kills on its own, drug abusers die from mixed drug toxicity (combining alcohol and/or sedatives with opioids). Of course, opioid related deaths are almost all drug abusers. The statistics are never deaths caused by opioids, they're "opioid related deaths" or "drug related deaths", meaning any death that occurs with a drug peripherally involved, even if it is completely unrelated to the actual cause of death.
Steve
New Drug Law To Relieve Pain For India’s Chronically Ill - India Real Time - Wall Street Journal
http://on.wsj.com/1bfce0P
Infographic: Patient Insights on Acute Pain | Turn the Conversation
http://bit.ly/LSxQ7k
I don't want to discount the help that some people get from yoga, pilates, and similar regimens, but FAR too many people, including a frightening number of physicians, simply ASSuME that non-opioid, non-surgical, and non-medication treatments are safe. The common argument is that, even if these aren't effective, the benefit:risk ratio must be acceptable because they assume that these are safe. Any exercise program can exasperate CP/IP, but some of these risks are extremely severe.
NYTimes.com: How Yoga Can Wreck Your Body
From The New York Times:
How Yoga Can Wreck Your Body
Popped ribs, brain injuries, blinding pain. Are the healing rewards worth the risks?
"Not just students but celebrated teachers too injure themselves in droves because most have underlying physical weaknesses or problems that make serious injury all but inevitable"
I don't want to discount the help that some people get from yoga, pilates, and similar regimens, but FAR too many people, including a frightening number of physicians, simply ASSuME that non-opioid, non-surgical, and non-medication treatments are safe. The common argument is that, even if these aren't effective, the benefit:risk ratio must be acceptable because they assume that these are safe. Any exercise program can exasperate CP/IP, but some of these risks are extremely severe.
NYTimes.com: How Yoga Can Wreck Your Body
From The New York Times:
How Yoga Can Wreck Your Body
Popped ribs, brain injuries, blinding pain. Are the healing rewards worth the risks?
"Not just students but celebrated teachers too injure themselves in droves because most have underlying physical weaknesses or problems that make serious injury all but inevitable"
I just wanted to let everyone know that ForestTennant.com is down (the domain has expired). I've written to him about it, but for the meantime, please know that http://bit.ly/PainGuidePDF will not work. I've created a new link that is not dependent on his site, so you can still share the Intractable Pain Patients' Handbook for Survival with the following link:
http://bit.ly/painguide
My Story: Walgreens is Ruining My Life - National Pain Report
http://bit.ly/1dgNjnj
Okay, so I got a little carried sweaty with my comment, but that's no reason not to share it with you guys!
-------------------------
This is all part of the DEA's war on doctors and war on patients. Drug dealers aren't easy to go after and they fight back. Doctors have plenty of non-hidden resources and admit they dispensed the meds. The DEA is made up of a bunch of cops who are too ignorant to acknowledge their own medical ignorance who can't tell the difference between medical practice (which they are expressly forbidden from governing under the constitution- legitimate medical practice is exclusively governed by the states) and pill mills. Unfortunately, the DEA is left to determine what is legitimate medical practice with no medical training and AUSA (Assistant US Attorneys) have been know to later bribe "medical experts" up to $40,000 to say that the accused doctors are out of bounds.
Even if a doctor wins their case, they end up hundreds of thousands of dollars (easily $750,000) in the hole with NO MEANS TO REPAY THAT DEBT because they lose their medical licenses automatically.
Our entire legal system is BROKEN! The accused are GUILTY UNLESS PROVEN INNOCENT, instead of INNOCENT UNTIL & UNLESS PROVEN GUILTY. That's a big problem, but it can be fixed in pieces. For example, doctors should be judged by THEIR PEERS, OTHER DOCTORS, not cops. The DEA should have NO POWER over medical practice and allegations of overprescribing should be handled by state boards with criminal charges being decided by state DAs and this should be ONLY AFTER there medical board determined that their actions were outside of the scope of medical practice.
Doctors must stand up against the DEA's tyranny and we must stand up for our doctors. Enough of the DEA's games, enough of the scapegoats, enough of the lies from doctors, from pharmacists, from drug companies, and ENOUGH of the DEA's lies.
Knowledge is POWER and the DEA knows that and that is why they spread their propaganda. We must counter their lies with smart, level headed rebuttals. Statistics are powerful and we must remember to use specific statistics and clinical trial results because, while our individual stories are powerful, large trials sway opinion faster. Everyone who is comfortable doing so should call their local news stations and encourage them to do stories about the suffering of CP/IP (chronic pain/intractable pain) patients as a whole AND about our individual struggles. We must rebut the DEA's "Opioid Epidemic" and reminds the nation, and the world, that the true epidemic is underprescribing and undertreatment. The 'Epidemic of Undertreatment' is a threat to our national and economic security.
Our comments here are a start, but I encourage all of you to branch out beyond the CP/IP world. Post this and every other article and opinion publicly on your Facebook, Twitter, Google+, and every other site. Branch out beyond the internet (if you are able). Write to your elected officials, medical boards, medical societies, and anyone else who might listen.
Above all else, STOP BITING YOUR TONGUE WHEN YOU'RE LIED TO!!! When your doctor says that there is a "new law" causing him/her to reduce your meds, instead of admitting his/her cowardice, POLITELY inform him/her that you mean no disrespect and are not arguing with his/her decision, but there are no new laws governing prescriptions, however you understand that the DEA has been overly aggressive. You stop the lies, build a report (silent 'T'), and it can cause your doctor to consider more adequate prescribing because you can build trust through honesty.
Although I worded this all as "directions", I mean it all as suggestions and I hope that you all can understand my passion for this subject and not hold my wording against me.
Steve
If anyone knows of any articles or studies that I can add to http://bit.ly/IPkills in order to represent what chronic pain is really like for patients, physicians, pharmacists, nurses, caregivers, physician extenders, family members, etcetera, please email a link to me. I'm also working on a less personal site, essentially an encyclopedia of chronic/intractable pain. Any articles for that site are also welcome.
IntractablePainKills at gmail.com
Fibromyalgia solved: Not in the mind, but a very real physical ailment | Washington Times
http://bit.ly/1eL1qpQ
Something that the CP/IP community has known for years...
... IT'S NOT ALL IN OUR HEADS!!!
Even for CP/IP sufferers without Fibromyalgia, this should be welcome news because most complex pain patients have at one time or another been told that it's "all in our heads" or it's Fibro, take some Prozac/Cymbalta/Lyrica/gabapentin.
I, myself, suffered throughout most of my childhood with excruciating pain caused by childhood Fibromyalgia. Of course, as a minor, I received no pain medication. I wasn't even given worthless antidepressants. I wasn't officially diagnosed with anything, I was told that I suffered from "growing pains" and every future complaint was promptly dismissed (yes, I'm bitter). As an adult, I was repeatedly misdiagnosed with Fibromyalgia only. I wouldn't have been so upset with this misdiagnosis if Fibromyalgia wasn't treated like a second class illness. Although I still do still suffer from Fibromyalgia, most of my pain is cancer pain with some Fibromyalgia "sprinkled" in between (the two are completely different for me).
Thank you to the researchers who took the time to show that we're in pain, not crazy.
-Steve
I felt bad for not updating much lately, so here we go. My doctor increased my clonidine patch to two clonidine 0.3mg/day patches (0.6mg/day). In short, it made me sleepy for two days, and extremely weak for a week. I'm recovering now, but I'm worried because my legs still hurt. On a positive note, it is helping with other symptoms, like my headaches.
Christmas was hard, but I'm surviving. I'm praying that Santa was a little late with my Christmas wish, a pain doctor willing to manage my pain. Maybe, my future PM doctor is waiting for New Years and their New Years revolution to help more Medicare & Medicaid pain patients.
I wish everyone a happy, pain-free New Year
-Steve
P.S. Got a Canon EOS Rebel T3 digital SLR for Christmas. I haven't had a chance to play with it because it was just delivered yesterday thanks to FedEx taking THREE WEEKS to deliver it. I'm so excited! Remember, hobbies are great distraction techniques.
New Harvard paper slams FDA, says agency 'cannot be trusted'
http://bit.ly/1eEj15e
This link was posted on a support group and I started to reply, but that turned into a rant, which sent off-topic. Essentially, it's about the problems with the FDA, and the system as a whole specifically as it relates to pain management, opiophobia, the epidemic of undertreated pain, and how money in medicine is a conflict of interest.
Sorry for the length, but, like I said, it just spilled onto the page. Yes, this has hurt me directly, but it's really hurt me the most indirectly. I've had to sit idly by as my wife, friends, and fellow support group CP/IP sufferers suffer needlessly from crippling diseases including EDS, Fibromyalgia, CFIDS/CFS/ME, IP, cancer pain, lupus, MCTD (mixed connective tissue disease), various autoimmune diseases, CPS (Central Pain Syndrome), Rheumatoid Arthritis, RSD/CRPS (Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome) and so much more.
This is emotional and disorganized, for that I apologize (I'm too sleep deprived to correct it).
~~~~~~~~~~~~~~~~~~~~~~~~~
I've known that we can't trust the FDA since Lyrica and Cymbalta were approved for pain. Yeah, they help some people, but they're statistically irrelevant. That, and their constant denials of efficacious drugs like Xyrem/sodium oxybate for Fibromyalgia (the Fibromyalgia formulation wouldn't be called Xyrem) and several pain medications despite superior evidence than many other approved drugs. I'll eat my hat if they ever approved Sativex.
The DEA is in charge of diversion, the FDA is not supposed to deny drugs because of abuse potential, but they do it all the time.
Don't get me started on the untested abuse deterrent OxyContin, Opana ER, etcetera.
Plus, they don't make any generic manufacturer test the extended release mechanism on anything but the lowest dose, the test are statistical estimates. The worst part is that the FDA approved monographs parade these estimates as trial results.
The problem is our system, profit is put ahead of people and that's why we all suffer. If FDA approval was based on efficacy and adverse reactions, medicine was about helping patients, and not the almighty dollar, cannabis, Sativex, sodium oxybate for FM, 90 day sufentanil implants, diacetylmorphine/diamorphine, ibogaine, countless other medications would be readily available, and many, many other medications would never have been approved. Actiq would be available for any patient that can't get relief from pills, not just well insured cancer patients (although even we cancer patients can't get prescriptions anymore because writing opioids prescriptions isn't cost effective for doctors because of poor reimbursement and excessive paperwork).
Kids sbouldn't be given $20/pill (over $60,000/yr) antipsychotics for insomnia (melatonin, zolpidem, benzodiazepines, barbiturates, Rozerem, all more effective, safer, and cheaper), behavioral issues (discipline), autism, Asperger's Syndrome (TALK to your children and work with them, you can overcome it without toxic antipsychotics, and in many cases, no drugs at all; insomnia must be treated, but many respond to melatonin).
The FDA is owned by the drug companies, their profits, not our best interests are at heart.
Occasionally, Opiophobia or similar irrational fears of abuse overcome profits, but it's extremely rare. Usually, it's profits.
Ibogaine is more effective that methadone or buprenorphine, but out only requires one treatment and can't be patented.
Methadone is $10-15/month, but it can only be used to treat addicts in expensive, inconvenient clinics. They could allow doctors to prescribe it for addiction like they do for pain management, but that's not in Suboxone's best interests. Sparse methadone clinics, daily visits, high costs, limited hours, and overall inconvenience push people from methadone to Suboxone. Many of my friends with CP/IP have faked addiction to get methadone and/or to get buprenorphine (never at the same time) when their states effectively banned effective pain management, I've researched this for many friends in Florida, Texas, Washington, Oregon, and several other opiophobic states.
AVERAGE monthly costs (excluding initial methadone/Suboxone intake fees; $150-300+)
methadone Rx $10-15
Methadone clinic $60*-600
30 day Suboxone $600-900
*$60 are state funded clinics and not really average
Legalized Cannabis is a drug company's worst nightmare, effective, safe, and NATURAL (no patent). Not only that, but people can GROW IT THEMSELVES, no need for drug companies at all. Even generics make them big money.
Methadone is a great pain drug, but terriers prescriber education. Also, when used for pain management, it only lasts 6-8 hours. They could make a once daily version, but the drug is so cheap that insurance companies aren't going to pay 20-50x more for methadone ER and drug companies aren't going to sell methadone ER for anywhere near its current price
*~Breakthrough Med Pricing~*
135 methadone 10 mg (45mg/day)<$12 (cash), ~$6 (Medicare D)
180 oxycodone 30mg (30mg 6x/day) ~$300 (cash), ~$75 (Medicaid rate)
1080 oxymorphone 10mg (20mg 6x/day) ~$11,000/90 day (cash), ~$6000/month (Medicare)
270 oxymorphone 10mg (15mg 6/day) ~$3000/month (cash), ~$1600 (Medicare)
Is it surprising that OxyContin and Opana ER are pushed by drug companies? Those are GENERIC prices. Why bother with ER methadone, especially when it's exclusivity would be much more limited than OxyContin.
*Wholesale prices per pill*
Oxymorphone 10mg $5.65
Opana 5mg $3.60
Opana 10mg $6.53
Oxymorphone ER 5mg $1.74
Oxymorphone ER 40mg $11.13
Opana ER 5mg $2.39
Opana ER 40mg $15.31
Oxycodone 30mg $0.36-1.45
OxyContin 30mg $6.93
OxyContin 80mg $16.33
Morphine 30mg $0.23
Kadian 30mg $6.37
Kadian 200mg $43.01
Avinza (morphine) 30mg $5.77
Avinza (morphine) 120mg $19.89
MSContin 30mg $4.04
MSContin 200mg $21.39
Morphine Sulfate ER 30mg $0.82-1.70
Morphine sulfate ER 200mg $3.95-8.99
Methadone 5mg $0.0852-0.0868
Methadone 10mg $0.1410-0.1920
Methadone 40mg solutab $0.2976-0.3316 (methadone clinics only)
Dolophine 10mg $0.2026
Methadose 40mg solutab $0.3300
Fentora 0.6mg $82.24
Methadone ER isn't going to happen in our system.
Prialt/ziconotide intrathecal (cone snail neurotoxin) was only approved to discourage abuse proof intrathecal morphine. They actually put a neurotoxin closer to your spine than an epidural. It causes psychosis and death in way too many patients, including several of my friends.
Actiq was $1-2/dose and extremely effective, but the opiophobic FDA refused to approve it for over 20 indications. They shut the company up by going from moderate to severe BTP (breakthrough pain) to the incredibly narrow severe breakthrough cancer pain. This indication got it to the market and physician's wrote prescriptions off-label for desperate patients who had tried everything else. Unfortunately, the prove started to rise. Eventually, the price got high enough to cancer insurance companies to require prior authorization and limit coverage to cancer patients, effectively banning off-label use. This caused further prove increases. GENERIC OTFC (Oral Transmucosal Fentanyl Citrate) is now $20-80/lozenge and patients are limited to four lozenges (2 flares per day). My prescription was $60/dose, $240/day, $7200/month, & $21,600/90 day Rx. Thankfully covered by Medicare (they negotiated ~$6,000/month ~18,000/90 day Rx). Unfortunately, the FDA furthered the EPIDEMIC of undertreatment and underprescribing of opioids by instituting an extremely overzealous class-wide REMS on TIRF (transmucosal immediate release fentanyl; Actiq/OTFC/Fentora/Onsolis/Subsys/Lazanda/Abstral). This seems like just Opiophobia, but there is also a financial motive. While it would seem that restricting such an extensive drug would be detrimental, a second generic manufacturer finally broke the duopoly, which would have allowed competition if demand hadn't been decimated. Also, despite fentanyl lozenges being extremely high profit thanks to fentanyl citrate being DIRT cheap, even more money can be made with interventional pain management, antipsychotics, antidepressants, anti-epileptic mood stabilizers, and overpriced NSAIDs, like the cox2 inhibitor, Celebrex.
I can take an effective dose of opioids, or I can get less relief and more side effects by taking a conservative dose of opioids plus OVER a DOZEN non-opioids.
Last, but not least, the lack of FDA approved treatment for CFIDS, despite clear evidence that Rituxan/rituximab and Ampligen are both effective. Unfortunately, they're expensive, very expensive. Antidepressants are cheap and so many people believe the CDC propaganda. CFIDS research funding has been frozen for 20 years. In order for it to have kept up with inflation alone, it should have doubled.
The US clinical trials for CFS/ME are less conclusive than they should be because the FDA requires the use of there CDC CFS criteria instead of the more specific ME criteria and too many misdiagnosed patients end up trials. The FDA uses this as an excuse to block approval. If you exclude the patients that don't resound at all, the drugs are miraculous for the remaining patients.
The real reason that that hasn't been approved is two-fold.
1) it treats CFIDS as a physical illness
2) Ampligen is owned by a tiny Philadelphia biopharma company, Hemispherx. They don't have the money to have have the FDA in their pockets and aren't rich enough to get away with bribery
Posted 12/25/2013 08:57:00 AM
Edited March 16, 2014 7:42 am
Edited March 16, 2014 6:05 pm
I received my first box of clonidine patches today. I opened the box to find 4 clonidine 0.3mg/24hr patches and 4 foam overlays (personally, I prefer occlusive dressings, but these work alright).
I placed roughly a third of a patch out of an abundance of caution and in seven days, I'll use the roughly 2/3 patch, then go to full patches.
When I started the pills, I had very little side effects, but I'm experiencing significantly more sedation than previously. Despite a reasonable amount of familiarity with this chemical, I'm a little freaked out.
Wish me luck...
Note: on clonidine for neuropathy & headaches
Unfortunately, I didn't feel up to updating you guys after my appointment, but better late than never.
As always, my doctor was kind and logical (even more so that I expected) while, unfortunately, medically impotent.
I informed him that the oxymorphone was effective for the minor flares, but that my around the clock pain is still out of control. I didn't even ask for a increase in Duragesic, I knew that I wasn't going to get it, so I purposefully dismissed the possibility. Instead, I asked for an increase in clonidine and a switch to the patches (1mg pill only lasts me 4 hours each). Since I reported the lack of side effects and my blood pressure was still high enough, my doctor put me on 0.3mg/day clonidine patch, but I highly doubt that it will work at that dose. However, I can't say for sure because haven't tried our yet(pharmacy had to order it and now I'm waiting for ride to pick it up).
I informed him that a recent urine test of mine was positive for THC & 0.48ng/ml hydromorphone. However, my test was false negative for lorazepam, dextroamphetamine/Dexedrine (Like Adderall), and oxymorphone (among others). I had also informed him that my wife tested negative for everything, despite being on oxycodone, oxymorphone, fentanyl, alprazolam, Adderall, and several others. I semi-frantically attempted to explain that I was baffled as to how it was possible that hydromorphone was in my urine and explained my theories and why they're unlikely.
The first thing that he asked me was whether or not they did confirmatory testing (a strong sign of a good doctor), but I informed him that the original test was GC/MS (standard confirmatory testing method), although I'm unsure if it was ever run a second time.
He was at least somewhat concerned about the negative testing given our ample doses of several of those medications.
He was also amazed that the lab didn't know that Marinol (synthetic THC) causes a positive test for THC, even under GC/MS. They apparently don't know the difference between Marinol/dronabinol and "spice", aka K2.
I was extremely worried about my doctor's reaction to the above information because he isn't very comfortable with my need for high doses. I was also worried because he is also a Suboxone doctor and seeing multiple addicts every day tends to skew your point of view, but our PCP acted sanely, rationally, and even respectfully.
I had also informed him that I switched from ranitidine/Zantac to Tagamet/cimetidine a while back and needed a prescription for that so that my insurance would cover it and I could stop purchasing it OTC. Unfortunately, it is a strong CYP450 3A4 inhibitor which would boost the efficacy of several medications that I'm on by slowing the metabolism. Despite informing him that I've been safely taking cimetidine/Tagamet for months and months, he wasn't comfortable prescribing it, so I'm going to try famotidine/Pepcid, again.
Despite the lack of opioids and trying a failed drug, again, the appointment went better than I had expected and I was reasonably satisfied.
As a checked out at the front desk, I asked to talk to the head of Managed Care (referrals department), if she wasn't busy. Thankfully, she want and I was able to handle a lot of things and gain some piece of mind. Unfortunately, she informed me that I'm out of options for pain management and she's unable to try again without risking the office's relationship with this offices (they get blacklisted).
You may be asking why I am writing all of this, after all this is an everyday appointment. While these little appointments may seem insignificant, they are the threads that make up the fabric of pain management and living with pain care.
While on a mini-rant of frustration, she (head of managed care, who I've known since childhood) attempted to defend our PCP for his inadequate treatment regiment by reminding me that he puts his medical license at risk and he's already pushing it with what he's prescribing now. Of course, I already know this and understand it all too well, but it is well worth remembering that it takes a very strong person to stand up even to the extend that or physician has and their livelihoods are at risk by helping us. The medical establishment as a whole needs to fight this so that doctors are not required choose between breaking their oath by letting their patients suffer and risking their medical license (and even freedom) because they prescribed longterm, and high dose, opioids to pain patients.
Although we need to fight for reform, we must also be appreciative of, and thank, the physicians who do risk their livelihoods to prescribe the medications that give us a life worth living, even off they aren't prescribing enough. I'm not saying kiss their @$$ for prescribing tramadol/Ultram/Ryzolt (antidepressant), Nucynta/tapentadol (antidepressant), codeine, hydrocodone (weak opioid), Percocet (oxycodone paired worth poisonous acetaminophen), or low doses of morphine, oxycodone, oxymorphone, hydromorphone, or even fentanyl, but when they prescribe inadequate, but substantial doses of opioids, they deserve our gratitude.
My doctor irritated me when he refused to prescribe low dose methadone or continue to prescribe Actiq/OTFC/Fentora/Onsolis/Subsys/Lazanda/Abstral (immediate release fentanyl), but I owe him thanks for prescribing high dose Duragesic and moderately high dose oxycodone, and now oxymorphone. One of the more overzealous PMs that he sent me to told him to take me off potential drugs of abuse like lorazepam (seizures, anxiety, muscle spasms, pain, nausea, insomnia), dronabinol (nausea, vomiting, & wasting), Duragesic, OTFC (generic Actiq), oxycodone, and WELLBUTRIN XL (antidepressant). Thankfully, he completely discarded his advise.
Good luck to everyone out there and try not to overdo it this holiday season. Remember, Christmas is special without you overdoing it. Your friends and family need you healthy, the cookies, cleaning, cooking, and other baking van wait or be completely skipped.
Steve
It's 9:40am and my wife has yet to sleep, and my sleep was highly fragmented thanks to her efforts to clean and organize a lot of our stuff. We're both going to be dragging when we go to my "next day" appointment later this afternoon. My pain has been out of control and, despite all of knowledge and self education, I have no idea how I'm going to convince my PCP that I'm in need of additional help.
While I both sympathize and empathize with the uncomfortable position that my PCP is in, I NEED him to help me until (unless) he van get me an intrathecal pump management physician, PM, and/or palliative care specialist.
I'm mainly asking for an increase and change in form of my clonidine (1mg pill 2/day --> clonidine patch 3mg/day), but he and I both know that my current dose of fentanyl patches has been inadequate for YEARS and he always gets uncomfortable whenever I mention poor pain control. He knows that I need to be back on low dose methadone and Actiq. My pain is getting worse and the dose of medication that's always been inadequate is extremely inadequate (even without the effects of tolerance).
Honestly, I'm extremely depressed and unsure of why I'm still fighting to live.
Sorry for the depressing post, I just needed to vent.
-Steve
Palliative Care, the Treatment That Respects Pain
http://nyti.ms/1bGDUdX
Daily Kos :: California GOP creates fake health care website to discourage constituents from obtaining insurance
http://bit.ly/1eMeHg4
What more can I add?...
Got forbid they protect themselves and keep health care costs down. God forbid even a penny of healthy policy holders premiums goes to us unhealthy "leeches".
As a pain (& cancer) patient and a citizen, I find this the lowest of low. Disability is not a crime, or even a choice.
Steve
I'm pissed! In an effort to minimize the use of controlled substances, especially in children, doctors like to prescribe powerful more stabilizers (Lamictal, risperidone/Risperdal, Seroquel, etcetera) for pain and sleep. I myself was a victim of this kind of inappropriate prescribing.
Now, I'm bombarded with reports that THESE MEDICATIONS (Risperdal/risperidone, Seroquel, Lyrica/pregabalin, and gabapentin/Neurontin/Gralise/Horizant) ACTUALLY CAUSE PAIN!!!
I've known for years that Risperdal/risperidone is responsible for the painful facial tics, but the idea that these medications are actually causing or exasperating the conditions that they treat. That's like prescribing high dose acetaminophen/paracetamol/Tylenol for the pain of liver failure!
Do I believe that Risperdal is responsible for 100% of my pain? No, but my doctors are constantly telling me that my tumor on it's own should not be causing the severe, crippling pain that I'm experiencing on a daily basis and there isn't a doubt in my mind that this illegally marketed drug is responsible.
Risperdal could have been replaced with the following safer, cheaper alternatives:
1) melatonin (OTC supplement)
2) Z-drugs- zolpidem/Ambien/Intermezzo, Sonata/zaleplon,eszopiclone/Lunesta, zopiclone/Imovane/Zimovane/Imrest (Rx, controlled substances)
3) benzodiazepines, like lorazepam/Ativan (Rx, C4)- ideal for stress induced insomnia where you can't quiet your brain (exactly what I experienced)
Rozerem (Rx, non-controlled substance) was not approved at the time, but is currently very useful.
So why was I given an antipsychotic? Because the manufacturer illegal advertised off-label use and bribed doctors into prescribing it.
That is why the anti-controlled substances environment that we are living in is so dangerous.
Steve
I want to wish you all a Happy Thanksgiving. While pain often has a very negative effect on holidays, we must remember not to pretend that we're not in pain and overdo it. Enjoy the holiday, leave the stress and work for the healthy people.
-Steve
The Banned4Life Project
www.banned4life.org
Even the Red Cross doesn't believe that a lifetime ban on blood donation for gay men is warranted, but the FDA refuses to look at the facts.
My best friend from middle school is gay and HIV+. He obviously should be banned from giving blood until we find a cure, but not every gay man is at high risk of HIV+, it's all about behavior and a more complex and accurate set of questions should determine deferral length or ban. Monogamous homosexual men are considered by the FDA to be a higher risk than heterosexual men who regularly engages in unprotected sex with multiple prostitutes.
The risks you take and the threat that you pose should determine your ability to donate DESPERATELY needed blood.
As someone who might need blood one day, it scares me that stereotypes will determine the quality of blood that I get, instead of the actual risk.
The petition:
Banned for Life- Causes
https://www.causes.com/posts/833577
http://bit.ly/B4Lpetition
Once again, my wife and I volunteered at the local (well, 25 minute drive, ~15 miles each way) no-kill dog shelter this evening. Unfortunately, we had some rain, which caused my body to treat the 3 hours that we spent there feel like I was out and about for 30+ hours. Around two hours in, I was feeling extremely depressed and doing my very best to hide it. All of a sudden, the weirdest looking, and cutest, dog came over and jumped up on the table next to me. He sat as close to me as possible without touching me.
Maybe it was coincidence, but I truly believe that he knew exactly what was wrong and wanted to comfort me, but didn't touch me for fear of causing me additional pain.
While everyone else just thought that I was taking a break this dog knew not only that I was distressed, but that I was dealing with a lot of pain, even more so than usual.
-Steve
I once again feel the need to apologize. My posting has been limited lately.
As winter draws nearer, the child weather worsens, and so does my pain. The opioids only do so much and distraction techniques must pick up the slack. Unfortunately, some of the most effective distraction techniques will exasperate my pain. My wife and I have been volunteering at the local no-kill dog shelter. This is both a great distraction and a great way to add meaning to a life of unemployment. The unfortunate part is the side effect, the SIGNIFICANT increase in SEVERE pain.
My wife wants to volunteer much more often than I am physically able, so this thing that should have brought us together has been corrupted by intractable pain into another topic of animosity.
Pain corrupts most things that make like worth living, from work and volunteer work to dating, marriage, and sex. There's nothing that we can do to stop it, but that doesn't mean that we shouldn't try to fight it.
I never would have believe that at age 24 I would need to take multiple pills (breakthrough opioids and sometimes a muscle relaxer) in order to have sex. I used to save my Actiq for the end of the day because they allowed me to perform closer to the way my wife remembered before IP took over my life. Was I still able to go for six to ten hours, hell no, but two hours was no longer out of the question. Having sex half of a dozen (occasionally up to a dozen) times a day is also a pre-CP/IP pursuit, but twice in one day and three or four days a week is possible with carefully timed opioids. *quick note: Sex is a great distraction technique when the pain gets really bad, although it can also exasperate pain flares*
I believe that the biggest reason that untreated CP/IP destroyed marriages is that it destroys the closeness that comes from sex. I'm not saying that cuddling up and watching a movie doesn't have a similar effect, but everyone needs their own ratios of each. It's a lot easier to deal with a spouse (or significant other) who is grouchy from unrelenting pain if they make you feel special.
When my doctors first cut my fentanyl patches in half and eliminated my Actiq and methadone, I gave up on life. Everything suffered, especially my wife's and my sex life. We both felt like I wasn't contributing and my wife grew to resent all of the little things that she does to make my life livable. As time went on, either of us felt very sexy or sexual and several times per day quickly dropped to 2-3 times in the first month and 4-6 times the next month. Thankfully, my doctor started to realize that he was killing me and increased my pain medication. It was at that same time that I realized that it wasn't just our sex life that we had abandoned, it was most of our relationship. When you're bedbound from pain and there are multiple known cures (to being bedbound from pain, they're only treatments to the pain itself), you get depressed and lose the will to live- not sexy.
I originally had a point beyond describing the hell that is CP/IP, but I've forgotten what that is. So, I'll end with these thoughts
1) CP/IP will corrupt everything good in your life, you can't stop it, but you can minimize it's effect
2) sex is an important part of relationships, try not to let pain eliminate it from your life
3) when sex isn't an option, there are other ways to maintain closeness- USE THEM
4) without intimacy (sex, cuddling, etcetera), relationships are doomed to fail
5) tell your doctor what CP/IP is taking away from you (even if it is as embarrassing as sex), it makes it real for them
6) All men AND WOMEN with CP/IP should have testosterone levels checked, especially if you're experiencing a loss of interest in sex
Steve
P.S. I hope that everyone is in minimal pain and handling the changes in weather and the holidays without too much excessive stress.
Living with Pain: Handicapping the Disabled - National Pain Report
Sorry to post another article, but this seems highly relevant, especially when so much is being done to harm the disabled, handicapped, and those in pain.
Steve
Although this is specifically about preventative care, ALL EFFECTIVE TREATMENTS HURT RETURN BUSINESS, especially pain care (thank for profit medicine for a lack of effective treatments, especially opioids). Why stabilize a patient when return business would be threatened?
I was recently exited to learn that Novocure, the makers of the miraculous (IMO) NovoTTF-100A, recently released NovoTAL customizable arrays. I had originally been told that I couldn't utilize the Novocure system because of the location of my tumor (brainstem) and the arrays, but I want given any details. I had hoped that the new, customizable arrays could be used to work around the problem. Unfortunately, the arrays simply cannot be used to treat pontine gliomas due to the need to surround the tumor with arrays on all four sides (covering your ears and mouth a minimum of roughly 20 hours per day).
Long story short, I'm going to continue to live knowing that I'm doing nothing to treat my cancer, except for cannabinoids which appear to be only slowing the growth. Although they are significantly slowing the growth, they aren't stopping or reversing the growth.
Although the Novocure system is an amazing (effective and almost no side effects- mostly adhesive reactions) treatment option, it can't help me. The thought of the tumor continuing to grow and cause more pain is daunting and scary, but this system should help a lot of other people.
Steve
I used to try to talk to my Dad about medical stuff, but he hated it. He just couldn't understand that I needed someone to talk to. I was 15 and slowly dying, but even worse, I was in pain. I needed someone to bounce ideas off of and discuss my very limited treatment options (no opioids for minors, even with cancer). I think that a lot of us don't understand how our loved ones don't understand that CP/IP is part of our lives.
Steve
I haven't been online much lately because I've been exhausted. On Friday, my wife and I volunteered at a local dog shelter for three hours and I WAY overdid it. I missed everything we had planned on Saturday. On Sunday, we volunteered for about eleven hours, but I made sure that I sat most of the time (not easy for me). I washed and folded laundry, except when we took the dogs to Petco, which was really easy, almost therapeutic. I felt a lot better at the end of Sunday than the end of Friday, so we planned on volunteering on Monday (didn't happen).
Yesterday, we went to the dog shelter again, but unfortunately my wife got pretty sick. She's had a headache/migraine for days and hasn't eaten much. She was pretty dehydrated and couldn't stop vomiting, so we went to the ER. We were taken back pretty quickly because of her cardiac history, but they left her in the room without the nurse or CRNP checking on here for over AN HOUR!!! Even once the doctor ordered the IV Zofran, Toradol, and saline it took over half an hour before they gave it to her (I had to page the buses station repeatedly). The ER want even busy! They're usually at 200% capacity (patients in hallways), but they were only at 50-70% capacity.
They discharged her without her having eaten anything
The b!tch nun that came in to discharge was extremely rude when we asked for the sandwich and ginger ale that the CRNP said she could have. She got a ginger ale. I had to give her my Zofran 8mg before we left the hospital because she was discharged so quickly.
How can you discharge a nausea and vomiting patient without making sure they can keep food down? Plus, it was 1am and we didn't have want food at home that was easy to keep down, so we had to stop and buy her something on the way home.
ERs need to stop rushing patients out the door before making sure they're okay, ESPECIALLY when they don't need the bed.
I wonder if they do it to everyone. My wife has a capitated Medicaid HMO and I have Medicare Parts A&B as primary and traditional Medicaid as secondary. Has anyone else experienced this? If so, what type of insurance do you have?
She's doing better now, thanks to my Zofran (her insurance refuses to cover it). She's been sleeping ever since, except when I wake her up to take her meds.
To be completely honest, if my ER hadn't helped her, I was ready to go out and find her some cannabis so that she could eat and drink and break the cyclical vomiting cycle. She's become acidotic from this before, so I was pretty worried. Thankfully, their 2mg of IV ondansetron and 990ml of 0.9% NaCl solution (saline) helped her enough that she could keep down 16mg (8mg*2) of oral ondansetron, then some real food.
Steve
I spent a few hours volunteering at the local animal shelter yesterday. I WAY over did it yesterday, and now the nerves in my legs are on fire. I can practically trace the nerves because they're so inflamed. I missed our weekly outing with our daughter (museums, historical society, hikes, parks, carnival, Army war college, etcetera) this morning. This afternoon, I didn't get to go to the animal shelter (my wife still went and helped for two hours). And now, I'm missing out on going out with some of the people at the shelter (my wife got both of us invited while I slept and she volunteered).
I'm not sure which is more frustrating
1) constant, unrelenting pain
2) inconceivable BTP (breakthrough pain) flares
3) missing out on everything (family stuff, social stuff)
4) NO ONE gets it
I think the worst part of this is that none of this is necessary! I'm in pain for no legitimate reason. My pain was under control (bad, but under control) with low dose methadone, Actiq, Duragesic, and oxymorphone. My pain was virtually eliminated with 3mg/day intrathecal morphine. I feel like the one sane person in a world of crazy. I feel like I'm screaming and no one is listening. I'm in excruciating pain, there's medication that can fix it, I'm insured, my insurance will cover Duragesic, Actiq, methadone, oxymorphone, AND an intrathecal pump, I have NO risk factors (including NO family history) for abuse, I don't smoke, I don't drink, I've never abused my medication, I've never been high, I have cancer, I'm dying, I've never run out of meds or needed an early refill, I've tried EVERY non-drug treatment recommended, I've tried every non-opioid, I've tried every single weaker opioid, I'm beyond compliant, I keep myself informed (as instructed, although it's being used against me now)... and, STILL, I'm treated like shit and get inadequate treatment.
How does this make any sense to anyone?
Steve
The scary truth about our pain problem - Chatelaine.com
http://bit.ly/HIOqE7
This article is about Canada and their pain management problem, but the USA has similar issues, and this article is well written and well informed.
A blog entry that I found very interesting and relevant...
Surprise! We’re Chronic and Intractable Pain Patients, NOT Addicts! | Intractable Pain Journal
