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I've been looking for some other CP/IP (Chronic/Intractable Pain) patients who would like to contribute to this site, whether one time, sporadic, or regularly. If anyone is interested, please email me at IntractablePainKills@gmail.com

I'm also open to any suggestions about improving the blog.

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DUE TO A GLITCH IN BLOGGER, MY POSTS DO NOT ALWAYS POST IN ORDER BECAUSE THEY POST USING THE TIME THAT I STARTED THE INITIAL DRAFT. I DO MY BEST TO CORRECT THIS WHENEVER POSSIBLE, HOWEVER SOME SLIP BY, SO PLEASE REMEMBER TO READ THE TITLES OF MORE THAN JUST THE MOST RECENT POST IF YOU DON'T WANT TO MISS ANYTHING.
Showing posts with label opinion. Show all posts
Showing posts with label opinion. Show all posts

Monday, June 16, 2014

Promising Results for New Trigeminal Neuralgia Drug - National Pain Report

Promising Results for New Trigeminal Neuralgia Drug - National Pain Report
http://bit.ly/1uzi9kP

This is a novel compound, not a patent extension or reformulation. It's another sodium channel blocker, but it is being specifically developed for Trigeminal Neuralgia. I doubt this will be a game changer, but I do believe that having another treatment option has the potential to help many people.

Thursday, June 5, 2014

My Story: The Dark Side of the Anti-Opioid Campaign - National Pain Report

My Story: The Dark Side of the Anti-Opioid Campaign - National Pain Report
http://bit.ly/1unVrhi

This article, and the comments, really say it all. The anti-opioid propagandists are doing nothing to fight drug addiction, but their restrictions are destroying HUNDREDS OF MILLIONS of lives. Even the lucky few who have prescriptions are afraid to sneeze wrong or risk being cold turkeyed.

Summer Break

I haven't been paying much lately because my wife and I have had ridiculously busy weeks topped off with our daughter's kindergarten graduation yesterday (Tuesday). Her last day of school is tomorrow (or, rather, today... Thursday) and it's a half day (they get out at 10:45am).

While I'm extremely excited for her schedule to open up so that we can do more fun stuff (summer reading program, zoo trips, beach, museums, etcetera), I'm also worried about returning to chasing after her all day and all of the other things that go along with being a parent with chronic pain.

I've made rules for myself to prevent the typical cycle of over exertion & paying for that over exertion. I don't have them all written down, but they include (in no particular order):
1) TAKE BREAKS
2) "No" isn't a dirty word
3) Neither is "later"
4) kids don't need you to literally chase after them, just keep them within your eyesight when outside your home
5) Play dates are your friends (when you watch other people's kids, they really entertain your kid and you get free time when their parents return the favor)
6) don't afraid to ask for help
7) Kids will test you anytime things change, enforce discipline in June so July & August are smooth sailing
8) Don't forget your pain medication & don't skip doses, keeping your pain under control makes you a better parent
9) when you need a break, ask/tell your kid(s) to
10) DON'T BE SO JUDGEMENTAL/HARD ON YOURSELF
11) make time for yourself
12) make time for you & your significant other

Steve

Sunday, June 1, 2014

Opinion: Bill Would (Have) Force(d) Drug Makers to Make Painkillers Tamper Resistant

Bill Would Force Drug Makers to Make Painkillers Tamper Resistant- National Pain Report
http://bit.ly/1kYSnVB

I know that this story is about two years old, but there is talk of reviving this bill in light of the Zohydro (non-tamper-resistant hydrocodone ER).

There are several problems with tamper-resistant opioids:
1) tamper-resistant opioids don't always work as well (or at all)- they're tested on healthy people who have an easier time absorbing them (the healthy people have to absorb them within a 30% tolerance)
2) they don't stop people from abusing them, but it does weaken the "high", which causes them to go to diacetylmorphine/diamorphine/heroin
3) they increase pharmacy prices, which makes it harder for pain patients to afford their medications
3b) increased pharmacy prices lead to increased street prices, which causes addicts (& sometimes even pain patients) to switch to heroin
3c) street heroin has unknown potency, unknown impurities, & poor oral absorption causing people to resort to intravenous injections

The ONLY way to reduce the harm caused by drug addiction is to switch from the law enforcement model to a treatment based model and to LEGALIZE ALL DRUGS (private prisons and the DEA would lose money, so they spend a small fortune fighting this). Legalization (& the drop in prices that this would cause) would eliminate the violence, crime, and disease (people inject heroin because it HA poor oral absorption & injecting is cheaper- same high from less drug; legal drugs also lack the dangerous impurities found in street heroin).

Wednesday, May 28, 2014

Sham Medical Devices & "All-Natural" Treatments

I recently responded to a question about NEUROVA, a copy of TENS unit that doesn't require a prescription (a HUGE red flag).
This led me to the decision to write a post about scams. Scammers are taking advantage of chronic pain patients, especially desperate pain patients, and the current climate regarding opioids.
The most common scam medical devices are "electric stimulators", which are a cross between those electric weight loss belts from the 90s that were supposed to give you abs without working out and TENS units, they bypass FDA clearance & approval by calling them "electronic massagers". These "TENS" units are not the same thing as the more expensive FDA approved TENS units that treat pain, especially neuropathy. Any legal TENS unit (the devices that can treat pain) require a prescription. Really, anything that is supposed to treat pain but isn't approved by the FDA or a similar international agency is suspect. Prescriptions are required for all legitimate longterm pain treatments with only a few exceptions (even FDA approved OTC treatments, like acetaminophen/paracetamol/Tylenol and Ibuprofen/Advil/Motrin aren't safe and effective longterm chronic pain treatments without doctor supervision (which is why the label tells you to seek medical care if you haven't improved after a few weeks). Acetaminophen/APAP is hepatotoxic and NSAIDs cause stomach irritation and bleeding.
Anyway, back on track...
When it comes to sham medical devices and "all-natural" treatments, the websites are great places to found clues, the wording frequently gives them away. Examples of Ted flags include:
* bad mouthing other treatments, especially opioids
* vague explanations of how it works
* not listing ingredients
* anything that's "proprietary" or "patented"- Remember patenting doesn't mean it works, it means they filled some paperwork. If they're advertising or bragging about the patent, they're scraping bottom for ways to con you out of your limited resources
If you want all natural, drug free treatments, research & purchase specific supplements, not "proprietary blends". You can save a fortune by purchasing these ingredients in bulk and putting them in capsules by yourself. Amazon sells everything you need, if you're interested.











Disclaimer: The links above are affiliate links, which means that if you click either link and subsequently make any Amazon purchased I, or rather my daughter's college fund, will receive up to 2% of the purchase price of eligible items.

Tuesday, May 27, 2014

Xartemis XR

I recently saw an advertisement for Xartemis XR. The new opioid is overpriced, completely unnecessary, and dangerous. Xartemis XR is essentially OxyContin with acetaminophen (INN: paracetamol), aka Tylenol, added. Tylenol alone kills or hospitalizes more people than all legal opioids combined. The US government has a campaign against the unnecessary use of acetaminophen because of the hepatotoxicity of acetaminophen, even when used within guidelines.

Daily intake of acetaminophen (APAP) should not exceed 2600-3000mg (THREE GRAMS) per day and it should NEVER be taken on a regular basis because even normal doses of acetaminophen can be toxic after two weeks.

Tylenol is added to Percocet & Vicodin for ONE REASON, as an abuse deterrent. Unfortunately, that doesn't work, people just get acetaminophen poisoning.


Extended release opioids are primarily intended for long term use by chronic pain patients, so who is this stupid product intended for?


Xartemis XR (oxycodone/APAP extended release) is a SCAM to extort more money from insurance companies and cash in on the current climate of opiophobic hysteria. If your doctor tries to prescribe this for you, ask them why they are giving you an expensive name brand drug that is inferior to the generic alternatives and push for something better.

Friday, May 23, 2014

A Pained Life: I Know You Can Read - National Pain Report

A Pained Life: I Know You Can Read - National Pain Report

http://bit.ly/1t3m4W2

This article really says it all, so I'm just going to ask you to read it and leave it at that.

-Steve

Tuesday, May 20, 2014

California Law Would Require Cops To Return Seized Pot If Charges Are Dropped

California Law Would Require Cops To Return Seized Pot If Charges Are Dropped
http://bit.ly/1gjfLNC

I'm all for returning medication to patients once charges are dropped, but I fear that this could discourage police & prosecutors from voluntarily dropping charges (especially if the cannabis has already been destroyed), which would hurt patients.

I'm against allowing police to destroy ANY evidence. Aside from the obvious consequences (especially ease of fabricating evidence), this would make it easier to prosecute cannabis offenders, which is just plain wrong.

Steve

Monday, April 7, 2014

Seeing Failure as Success- A Pained Life

A Pained Life: Seeing Failure as Success - National Pain Report

http://bit.ly/1qeGax0

..."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

Thursday, March 13, 2014

FDA approved Fibromyalgia drugs cause side effects more often than relief

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."

Saturday, November 30, 2013

I'm pissed...

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

Friday, October 25, 2013

Treatment of chronic pain puts doctors in a no win situation

Since I regularly complain about the abysmal treatment of chronic and intractable pain patients in the USA, I thought that I should share this 2011 article written by a physician that explains the dilemma that (at least the good) doctors go through every time a pain patient walks into their office. I've included just a small excerpt from the article below, but I promise that the article is well worth reading in it's entirety. Although it SHOULD not be necessary, it may be extremely helpful to be able to empathize with the physician the next time that you have to try to convince them that your pain deserves adequate analgesia.

Treatment of chronic pain puts doctors in a no win situation
http://bit.ly/1ijfMMD

Steve

"...How the physician can be expected to “believe” the patient, yet not rely only on subjective history by the patient but have objective evidence often for problems where no objective evidence exists, is the inherent flaw in trying to define and regulate pain management....

...We are supposed to both show compassion and adequately treat non-malignant pain with the same drugs that professional patients and opioid abusers seek to get prescriptions..."

Saturday, October 12, 2013

Suboxone

Suboxone is NOT PAIN MEDICATION! It is for ADDICTS! It is buprenorphine and naloxone, but the naloxone/Narcan has no real effect when swallowed.

Below 0.2mg (like the buprenorphine patches) are for pain, above 2mg (like Suboxone) buprenorphine acts more like naltrexone. It prevents true opioids from working.

Sorry for the tone of this post, I'm frustrated, I've been seeing a lot of lies about Suboxone lately and it drives me nuts because most of the lies are started by DOCTORS!

Buprenorphine also seems to be much more habit forming than most opioids (likely due to the strong affinity for three mu-opioid receptors) and appears to create a much stronger physical dependence. It's harder to get off of than methadone, fentanyl, oxycodone, and morphine, especially for pain patients. For addicts, there's no high, so there's no temptation.

My last therapist specialized in pain patients and addicted patients, he told me that most of his patients that went on Suboxone regretted it. So many of them said that they'd rather stop heroin or methadone than stop Suboxone. I've also heard similar things from pain patients in my dozen different support groups after they were tricked into taking it.

I STRONGLY advocate AGAINST anyone starting Suboxone or Butrans
(buprenorphine patches) without FIRST researching them IN DETAIL.

Suboxone helps a few, but it hurts many. It is expensive, bad medicine. Methadone is 1/60th the price of Suboxone and it works for pain, dependence, or both at any dose.

Explanation of dependence, pseudo-addiction, addiction, and tolerance, for those interested
http://bit.ly/drugfallacies

Doctors can only LEGALLY prescribe Butrans for pain and Suboxone is only for opioid dependence. Accepting a prescription for Suboxone usually means that your chart will forever read "Opioid Dependence" or "opioid addiction".

Steve

Sunday, September 22, 2013

Is a glass of water all that different from pain?

I received an email thatcan easily be used to explain how difficult living chronic pain can be...

A young lady confidently walked around the room with a raised glass of water while leading a seminar and explaining stress management to her  audience.

Everyone knew she was going to ask the ultimate question, 'half empty or half full?' She fooled them all. "How heavy is this glass of water?" she inquired with a smile.

Answers called out ranged from 8 oz. To 20 oz.

She replied, "The absolute weight doesn't matter.  It depends on how long I hold it. If I hold it for a minute, that's not a problem. If I hold it for an hour, I'll have an ache in my right arm.  If I hold it for a day, you'll have to call an ambulance.  In each case it's the same weight, but the longer I hold it, the heavier it becomes."

She continued, "and that's the way it is with stress.  If we carry our burdens all the time, sooner or later, as the burden becomes increasingly heavy, we won't be able to carry on."

"As with the glass of water, you have to put it down for a while and rest before holding it again. When we're refreshed, we can carry on with the burden- holding stress longer and better each time practiced. So, as early in the evening as you can, put all your burdens down. Don't carry them through the evening and into the night. Pick them up again tomorrow if you must.

... many of us can handle acute pain without outside help beyond acetaminophen/paracetamol/Tylenol or ibuprofen/Advil/Motrin, but handling chronic pain of equal severity is a much more daunting task.

Sunday, September 8, 2013

SAMHSA Report: Good and Bad News on Drug Use in America

My opinion on SAMHSA Report: Good and Bad News on Drug Use in America

Heroin (diacetylmorphine/diamorphine) use likely rose in all age groups except children because doctors aren't treating pain anymore.

If you have CIPN (Chemotherapy-induced Peripheral Neuropathy) or other IP (intractable pain), and cannabis doesn't help you and medications like Actiq, Duragesic, oxycodone/OxyContin/OxyIR/Roxicodone, oxymorphone/Opana, hydromorphone/Dilaudid/Exalgo, and morphine are no longer available, what choice do you have? For many, it's diamorphine or die. Untreated IP kills.

Thanks to the lack of access, many pain patients have had to make such troublesome decisions.

Even the increase in cannabis use can surely be linked to expanded medicinal use as more states come to their senses and legalize and also more pain patients are switching to cannabis as opioid medications are vilified by the media and made next to impossible to acquire.

Luckily, binge drinking and DUI have both decreased, although DUI has only decreased mildly.

Steve
Check out my new blog at
http://bit.ly/IPkills
Send feedback to
IntractablePainKills@gmail.com

SAMHSA Report: Good and Bad News on Drug Use in America
http://bit.ly/18MG1Gm

Deborah Brauser

Sep 05, 2013

The newly released 2012 National Survey on Drug Use and Health (NSDUH) report from the Substance Abuse and Mental Health Services Administration (SAMHSA) contains both good and bad news this year, especially with regard to adolescents and teens.

Rates of binge drinking and heavy drinking in the previous month continued to decrease in those between the ages of 12 and 17 years, although the rates of driving under the influence of alcohol by teens in 2012 were comparable to the rates found in 2011 (11.2% vs 11.1%, respectively). The rates were significantly lower, though, than the high of 14.2% in 2002.

In addition, use of tobacco products continued to drop for this age group, as did the rates of overall substance dependence or abuse.

Although the rate of marijuana use rose in almost every age group, and was up from 5.8% of all Americans in 2007 to 7.3% in 2012, use of this substance dropped slightly for those aged 12 to 17 years.

However, use of heroin by all individuals older than 12 years rose dramatically during the past 5 years, from 373,000 users in 2007 to 669,000 users in 2012.

"These findings show that while we have made progress in preventing some aspects of substance abuse, we must redouble our efforts to reduce and eliminate all forms of it throughout our nation," said SAMSHA administrator Pamela S. Hyde in a release.

"Reducing the impact of drug use and its consequences on our nation requires a robust public health response coupled with smart-on-crime strategies that protect public safety," added Gil Kerlikowske, director of the White House Office of National Drug Control Policy (ONDCP), in the same release

The National Survey was released at a press conference on September 4 in observance of the 24th annual National Recovery Month.

"Making a Difference"

"The annual survey is the largest of its kind and is the government's primary vehicle for determining how many persons are using illegal drugs, alcohol, and tobacco, as well as how many are misusing pharmaceuticals," reports SAMHSA.

The NSDUH had approximately 70,000 participants throughout the United States.

It showed similar, although slightly increased, rates between 2012 and 2011 of past-month nonmedical use of prescription medications by individuals between the ages of 18 and 25 years (5.3% vs 5.0%, respectively). Both rates were significantly lower than the 6.4% found in 2009.

"For the first time in a decade, we are seeing real reductions in the abuse of prescription drugs in America, proving that a more comprehensive response to our drug problem can make a real difference in making our nation healthier and safer," said Kerlikowske.

Marijuana was the most commonly used illicit drug in 2012, just as it was in 2011, with 18.9 million past-month users. Still, the rate of use dropped from 7.9% in 2011 to 7.2% in 2012 for those between the ages of 12 and 17 years.

Although the overall use of illicit drugs by persons older than 11 years "remained stable" between 2011 and 2012, the NSDUH reports that 23.9 million Americans used illegal substances last year.

More Needs to be Done

The report was a little sunnier when it came to tobacco use in the 12- to 17-year-olds. The rate of use was 8.6% in 2012 compared with 10% in 2011, and was significantly lower than the 15.2% rate found in 2002.

In addition, this age group showed a drop in past-month overall use of illicit drugs, with a 9.5% rate in 2012 and a 10.1% rate in 2011, as well as small drops in the specific use of hallucinogens and inhalants.

Not so rosy is the report that "many American needing treatment for a substance use disorder are still not receiving specialty treatment." In other words, 2.5 million Americans older than 11 years received specialized treatment in 2012 ― but more than 23 million needed it.

The most common reason given for not seeking treatment was having no health coverage because of cost, followed by not being ready to stop using substances and current health plan not covering treatment and/or costs.

"These statistics represent real people, families, and communities dealing with devastating consequences of abuse and addiction. We must strive to prevent further abuse and provide the hope of treatment and recovery to all people needing help," said Hyde.

"Expanding prevention, treatment, and support…will be our guide as we work to address emerging challenges, including the recent uptick in heroin use shown in this survey," added Kerlikowske.

The complete survey findings are located on the SAMHSA Web site .