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.
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
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."
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
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.
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.
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
I realized that I've let some of you down by failing to post much more than links. For that I apologize, I owe you all some original content.
I decided to start out by updating you on hope I've been doing. Unlike most weekends, I didn't spend hours at the park, library, or historical society with my dad, wife, and daughter. Still, I'm in excruciating pain, as if I'd run a marathon. The clonidine isn't helping with the leg pain at all. Despite the fact that I can still walk sort distances and don't have paralysis, I know that I'll soon require a wheelchair because of the weakness and pain in my legs.
The opioids that my PCP (or anyone else) is willing to prescribe exclude three of the most efficacious medications, methadone, Actiq, & intrathecal morphine.
There's something that I've been considering that I am very much against overall. It has become extremely obvious that no one is going to come to my rescue. No one will prescribe what I need and no one is willing to manage an intrathecal pump on a patient like me. I am a high risk of litigation because when I die, there will be no way to prove that the tumor killed me, not the high dose opioids. Actually, the inadequate analgesia itself could cause my death (through stroke, heart attack, or even aneurysm) thanks to the constant overdose of cortisol and epinephrine/adrenaline.
I have many types of pain throughout my body. Most of it originates in my spine, brainstem, and/or brain. Most of the pain responds to mu-opioids. Unfortunately, my leg pain only responds to intrathecal mu-opioids and methadone.
Methadone is a mu-opioid, like morphine, codeine, fentanyl, sufentanil, alfentanil, oxymorphone, oxycodone, hydromorphone, hydrocodone, and others. Methadone is also a kappa-opioid and NMDA receptor antagonist. Both kappa-opioid and NMDA receptor antagonists are extremely effective in treating neuropathic pain. Contrary to popular belief, Neuropathic Pain DOES respond to mu-opioids, HOWEVER it requires significantly higher doses than other pain types. For patients, like myself, that were born with a high tolerance to opioids, all pain requires a higher dose of opioids, but neuropathic pain in patients who already require high doses requires higher doses than most doctors are willing to prescribe. Low dose methadone on its own doesn't help me with most of my pain and only partially reduces my neuropathic pain, but, when added to my fentanyl regimen, it almost eliminated my leg pain and somewhat improved my other pain.
For those of you that don't know, intrathecal pumps deliver medication into the spine (one layer deeper than an epidural). Unlike an epidural, they use opioids only or mostly opioids. They use little or no buprivicane, so you can still walk and feel your limbs. Morphine is the FDA approved opioid for intrathecal pumps (although fentanyl, sufentanil, alfentanil, hydromorphone, and methadone can also be used; hydromorphone and fentanyl are the most common off-label intrathecal opioids). ONE milligram per day of intrathecal morphine is ROUGHLY equivalent to
* 300mg/day oral morphine
* 180mg/day oxycodone
* 90mg/day oral oxymorphone
* 9mg/day IV/IM/SubQ oxymorphone
* 48mg/day oral hydromorphone
* 3-6mg/day fentanyl
* 125-250 mcg/hr fentanyl
While intrathecal morphine is 300x stronger than oral morphine, the side effects are not. I cannot tolerate 2mg of IV/IM morphine or 5mg oral morphine without my throat swelling up and a drastic increase in painful muscle spasms and my neurosurgeon knew this prior to my intrathecal morphine trial. He still decided to use morphine in my intrathecal trial. Even at 3mg/day (0.125mg/hr) intrathecal morphine (equivalent to 900mg/day oral morphine), I had ZERO side effects.
Back to my point, I'm considering making an appointment with the local interventional pain management doctor who treated me pretty well, despite his interventional only attitude.
I'm curious to know if any of you have any experience with injections for neuropathic leg pain. I'm afraid that it could make the pain even worse. I'm definitely against multiple longterm injections of steroids, but even a single injection of just the numbing agent (lidocaine or similar) carries risk. I'd love to read your feedback.
Speaking of feedback, I have been receiving reports of problems with Blogger's native commenting system, so I decided to switch to a third party system. The system that I chose is called Disqus. It does require login, but you don't have to sign up with them, you can login with your Facebook, Twitter, or Google account. You have to authorize Disqus to let you login with your social media account, but it's a onetime, quick, and easy. Please let me know what you guys think. Thanks.
If anyone would like to share their stories or ask any questions, please don't hesitate to email me or comment below.
Steve
IntractablePainKills@gmail.com