Harm Reduction The Pain Management Megathread (Chronic and Acute Pain Discussion) v6
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Hello everyone...I wanted to introduce myself. I have been lurking for a while but it is finally time for me to join the party. I really admire the way you all lift each other up. It is so hard, even though they try, for our loved ones to fully understand that a lifelong-illness can be masked but not completely healed with medications.
In the summer of 2013, at the age of 36, I had my first grand-mal seizure. Unfortunately, I was standing on a marble floor at the time and landed head first. The result was a skull fracture and four subdural hematomas. I was blessed with a second chance at life. After a few more concussions, including one that resulted in a totaled car on a busy highway, I was diagnosed with epilepsy and told that I would probably have terrible headaches, neck pain and muscle spasms for the rest of my life.
I waited for two years before I asked my Primary doctor for a referral to PM (you would think it is supposed to work the other way around?). I asked to meet with the LCDC at the practice two weeks before my appointment. Actually, I just showed up with a referral from my doctor, a binder full of the records they needed that I found on their web site, a spreadsheet with all of the things that I had tried, including ice and Advil, and goals that I had for pain management...(e.g. being able to work full time, etc.). The LCDC met with me that day for a long time and wouldn't let me leave until I scheduled the earliest available appointment. From their perspective, he explained, they work with shady characters all the time and have government agencies breathing down their necks constantly. Like any business, they want new patients. He told me directly that he didn't want to lose "a patient like me" who plays a proactive role in treatment and already has an end game in mind. I would suggest this to anyone thinking about beginning pain management.
During my first visit, I saw a PA who took a detailed history. At the very end of our conversation he asked me very directly, "has anything ever worked for your pain?," and started naming a laundry list of opioids. I was startled because a menu was the last thing that I was expecting after everything that I had read about other peoples experiences at pain management! Without giving it much thought, I said, "One time I went to the ER with the worst headache ever and they gave me a shot of Dilaudid. It worked so well that tears rolled down my face involuntarily." And that was that. I left my first appointment at PM with a script for 70 4mg hydromorphone.
During that month I learned all about bioavailability. Oral hydromorphone didn't make me cry. It took my pain away if I took 8mg, but it lasted maybe 3 hours. The rebound headaches were awful. I learned quickly that insufflation worked much better for me. At my next appointment, I asked about an extended release medication. Since before I started I had been on hydrocodone for over a year and then tried hydromorphone and neither of them worked, my doctor agreed and started me on Hysingla ER. He continued the hydromorphone for breakthrough pain.
Does anyone have any experience with Hysingla? I had a difficult time getting my pharmacy to carry it since the retail price is over 1,200 dollars per month. My insurance company made me switch to Kadian for one month which actually made me feel worse (actually my doctor was smart and wrote me a 15 day script bc he knew that was all he had to write to prove that I tried it). I have not
seen any experience reports anywhere that anyone is actually taking this medication, so I feel like the only one!
Here is my dilemma...I am struggling with the fact that it is a 24 hour formulation because it doesn't last that long. It works perfectly for about 16 hours and then I am going through the Dilaudid pretty quickly (the math doesn't add up, but that is for another post :/ ). If I get tempted, which I do, to take a second one during the day, then that is a whole day that I will be short at the end of the month. So...I wanted to see if anyone is taking Hysingla who has taken other long-acting opioids to tell me how they compare. I don't want to ask the doctor about switching when I have such a good thing going for *most* of the day.
Sorry about the length of the post, but I wanted to give a little background about who I am and maybe add something to the discussion with before I just throw my dilemma out there. I appreciate any feedback from you all since I know that you can relate. I look forward to being a part of the discussions!
In the summer of 2013, at the age of 36, I had my first grand-mal seizure. Unfortunately, I was standing on a marble floor at the time and landed head first. The result was a skull fracture and four subdural hematomas. I was blessed with a second chance at life. After a few more concussions, including one that resulted in a totaled car on a busy highway, I was diagnosed with epilepsy and told that I would probably have terrible headaches, neck pain and muscle spasms for the rest of my life.
I waited for two years before I asked my Primary doctor for a referral to PM (you would think it is supposed to work the other way around?). I asked to meet with the LCDC at the practice two weeks before my appointment. Actually, I just showed up with a referral from my doctor, a binder full of the records they needed that I found on their web site, a spreadsheet with all of the things that I had tried, including ice and Advil, and goals that I had for pain management...(e.g. being able to work full time, etc.). The LCDC met with me that day for a long time and wouldn't let me leave until I scheduled the earliest available appointment. From their perspective, he explained, they work with shady characters all the time and have government agencies breathing down their necks constantly. Like any business, they want new patients. He told me directly that he didn't want to lose "a patient like me" who plays a proactive role in treatment and already has an end game in mind. I would suggest this to anyone thinking about beginning pain management.
During my first visit, I saw a PA who took a detailed history. At the very end of our conversation he asked me very directly, "has anything ever worked for your pain?," and started naming a laundry list of opioids. I was startled because a menu was the last thing that I was expecting after everything that I had read about other peoples experiences at pain management! Without giving it much thought, I said, "One time I went to the ER with the worst headache ever and they gave me a shot of Dilaudid. It worked so well that tears rolled down my face involuntarily." And that was that. I left my first appointment at PM with a script for 70 4mg hydromorphone.
During that month I learned all about bioavailability. Oral hydromorphone didn't make me cry. It took my pain away if I took 8mg, but it lasted maybe 3 hours. The rebound headaches were awful. I learned quickly that insufflation worked much better for me. At my next appointment, I asked about an extended release medication. Since before I started I had been on hydrocodone for over a year and then tried hydromorphone and neither of them worked, my doctor agreed and started me on Hysingla ER. He continued the hydromorphone for breakthrough pain.
Does anyone have any experience with Hysingla? I had a difficult time getting my pharmacy to carry it since the retail price is over 1,200 dollars per month. My insurance company made me switch to Kadian for one month which actually made me feel worse (actually my doctor was smart and wrote me a 15 day script bc he knew that was all he had to write to prove that I tried it). I have not
seen any experience reports anywhere that anyone is actually taking this medication, so I feel like the only one!
Here is my dilemma...I am struggling with the fact that it is a 24 hour formulation because it doesn't last that long. It works perfectly for about 16 hours and then I am going through the Dilaudid pretty quickly (the math doesn't add up, but that is for another post :/ ). If I get tempted, which I do, to take a second one during the day, then that is a whole day that I will be short at the end of the month. So...I wanted to see if anyone is taking Hysingla who has taken other long-acting opioids to tell me how they compare. I don't want to ask the doctor about switching when I have such a good thing going for *most* of the day.
Sorry about the length of the post, but I wanted to give a little background about who I am and maybe add something to the discussion with before I just throw my dilemma out there. I appreciate any feedback from you all since I know that you can relate. I look forward to being a part of the discussions!
DixiChik
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Hello Micasa and WELCOME! 
I am sorry for the pain you have endured (and continue to endure). I have no experience with Zohydro or Hysingla (which is the tamper proof version, right?). I've wanted to try the Zohydro since enrolling in PM, but it's so very expensive, my insurance will not approve. You've answered a BIG question I had about the 24 hour dosing (Hysingla) The Zohydro is 12 hour, isn't it? Would that possibly be your answer, if you can continue a BT med?
Wow, in review, there are far too many question marks in that paragraph^^It sounds as though you have a really invested pain specialist who truly cares about our QOL. That seems rare, in today's environment. There are good folks here who certainly understand CP. We're glad you found us!
I am sorry for the pain you have endured (and continue to endure). I have no experience with Zohydro or Hysingla (which is the tamper proof version, right?). I've wanted to try the Zohydro since enrolling in PM, but it's so very expensive, my insurance will not approve. You've answered a BIG question I had about the 24 hour dosing (Hysingla) The Zohydro is 12 hour, isn't it? Would that possibly be your answer, if you can continue a BT med?Wow, in review, there are far too many question marks in that paragraph^^It sounds as though you have a really invested pain specialist who truly cares about our QOL. That seems rare, in today's environment. There are good folks here who certainly understand CP. We're glad you found us!
Thanks for the warm welcome! Zohydro may be a great choice. I didn't realize that was 12 hours, but I looked it up and indeed it is. I think everyone's mileage varies with this Hysingla because after 3-5 days it should be at steady state and normal people shouldn't fluctuate as much as me. I wouldn't want to dissuade anyone from trying it if I am the outlier, because really my QoL is so much better than when I started in PM. That is why I face the dilemma. Part of me doesn't want to be greedy and mess with a good thing.
As far as being tamper-proof...what I will say is that if you have strong jaws and the determination...it is tamper resistant.
But then it lasts 10-12 hours and derails your treatment.
Battles with insurance companies are like a hobby for me. They cannot arbitrarily refuse to cover your prescription because it is expensive. Insurance is expensive and we pay the premiums every month to get the best care available. Not what they think we deserve. There are laws that protect the patient and they had better be able to provide a solid paper trail for their denial of coverage. Usually they deny because the medication is deemed "not medically necessary," or you haven't tried cheaper, similar medications. Like my insurance company's Step Therapy program said that I had to try Kadian, OxyContin, or generic Oxymorphone before I could move up.
It can be a pain. I had to call the insurance company and have them call the doctor's office on three-way to make sure it got approved in a decent amount of time, but it all worked out. Another thing to think about that is that the doctor is sometimes rewarded for prescribing brand-name products and that can be motivating.
www.patientadvocate.org has great resources for people in our situations learning to go toe to toe with insurance companies. Here is a six-page guide about how to appeal if the insurance company denies your claim:
http://www.patientadvocate.org/requests/publications/CAG_CommonObstacles_web.pdf
Patient advocacy is a passion of mine. I just don't think that any of us should have to settle for second best just because pain management hasn't received first-class status yet!!
As far as being tamper-proof...what I will say is that if you have strong jaws and the determination...it is tamper resistant.
But then it lasts 10-12 hours and derails your treatment.Battles with insurance companies are like a hobby for me. They cannot arbitrarily refuse to cover your prescription because it is expensive. Insurance is expensive and we pay the premiums every month to get the best care available. Not what they think we deserve. There are laws that protect the patient and they had better be able to provide a solid paper trail for their denial of coverage. Usually they deny because the medication is deemed "not medically necessary," or you haven't tried cheaper, similar medications. Like my insurance company's Step Therapy program said that I had to try Kadian, OxyContin, or generic Oxymorphone before I could move up.
It can be a pain. I had to call the insurance company and have them call the doctor's office on three-way to make sure it got approved in a decent amount of time, but it all worked out. Another thing to think about that is that the doctor is sometimes rewarded for prescribing brand-name products and that can be motivating.
www.patientadvocate.org has great resources for people in our situations learning to go toe to toe with insurance companies. Here is a six-page guide about how to appeal if the insurance company denies your claim:
http://www.patientadvocate.org/requests/publications/CAG_CommonObstacles_web.pdf
Patient advocacy is a passion of mine. I just don't think that any of us should have to settle for second best just because pain management hasn't received first-class status yet!!
DixiChik
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I am battle weary after decades of this FIGHT. 
No doubt, if my PM were worth his salt, he'd intervene and advocate on my behalf.
It's just easier for him to say "your life could be so much better if you could afford X, Y or Z". No shit, Sherlock! He's a joke with no punch line. No, I don't have options, without a 2 hr. drive one way.
No doubt, if my PM were worth his salt, he'd intervene and advocate on my behalf. It's just easier for him to say "your life could be so much better if you could afford X, Y or Z". No shit, Sherlock! He's a joke with no punch line. No, I don't have options, without a 2 hr. drive one way.
Runtoparadise
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Welcome Micasa!
I'd only just asked Dixi if she'd trialled zohydro, as it's very rarely been mentioned on BL since it's release.
We don't have it where I live, but I've rotated over the years to several once a day or twelve hr time release opiates (taken as prescribed of course ), and I metabolise them much quicker than they're meant to last.
Adding in a low dose of another ER med might be an option for you to discuss with your doctor. At one stage I was on a ratio of 75% oxy plus 25% MS Contin. I'm not sure all PMs would do this though, alternatively I was then prescribed oxy three times a day as it clearly didn't last twelve hours for me. With large amounts of oxycodone in between.
^Dixi, what help is available two hrs drive from you? Another PM? GI specialists?
I've posted before how I have to travel around a 3-4 hr round trip every fortnight, but I adore this dr & the way she advocates for me & gets things done!! Can't say I've ever had a better dr, although being a sole parent to sweetchildofmine is always difficult to arrange after school care for her,- but after my next visit,- before the 18th of this mth, I get a reprieve for the entire Xmas break as well as the six wks of summer school hols!! ?
In health & peace
Rtp
I'd only just asked Dixi if she'd trialled zohydro, as it's very rarely been mentioned on BL since it's release.
We don't have it where I live, but I've rotated over the years to several once a day or twelve hr time release opiates (taken as prescribed of course
), and I metabolise them much quicker than they're meant to last. Adding in a low dose of another ER med might be an option for you to discuss with your doctor. At one stage I was on a ratio of 75% oxy plus 25% MS Contin. I'm not sure all PMs would do this though, alternatively I was then prescribed oxy three times a day as it clearly didn't last twelve hours for me. With large amounts of oxycodone in between.
^Dixi, what help is available two hrs drive from you? Another PM? GI specialists?
I've posted before how I have to travel around a 3-4 hr round trip every fortnight, but I adore this dr & the way she advocates for me & gets things done!! Can't say I've ever had a better dr, although being a sole parent to sweetchildofmine is always difficult to arrange after school care for her,- but after my next visit,- before the 18th of this mth, I get a reprieve for the entire Xmas break as well as the six wks of summer school hols!! ?
In health & peace
Rtp
Runtoparadise
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Shroomy I'm so sad to see you feeling so desperate!! Desperate to feel like your old self, I wish you wouldn't turn to heroin.
I'm gonna PM you right now ok?
Rtp
I'm gonna PM you right now ok?
Rtp
^I was going to offer the same thing. You need a dose of RTP Shroomy. And Shroomy, I totally understand where you're coming from, in fact, many posters/members in this thread would understand at least the framework of what you are experiencing. Heroin is a wonderful drug, sure it fucks you up in the sense that you just can't get enough into you at some point or a myriad of other issues, but many of them are related to the fact that the drug is illegal and unregulated etc etc ad nauseam. But I get it.........hey if I didn't have a family, right now, I'd be shooting morphine if I could get it but otherwise Heroin, and when I buy I buy big.....and yes I would die choking on my own vomit but sometimes that seems like a very attractive proposition compared pain, pain, pain and nowhere near enough relief via Dr.
AnnaBanana333
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Hey Shroomi,
I am so sorry you're feeling this way. I totally understand, and am going through a rough patch, too. But please, hang in there. I know this may sound cliché, but have you tried therapy? I've tried so many kinds, and until I found the right person, it was pointless. But once I found her, totally worth it.
Regardless, we are here for you, and I am sending light and love to Canada right now. Hopefully you'll find a short break from this all.
AnnaBanana
I am so sorry you're feeling this way. I totally understand, and am going through a rough patch, too. But please, hang in there. I know this may sound cliché, but have you tried therapy? I've tried so many kinds, and until I found the right person, it was pointless. But once I found her, totally worth it.
Regardless, we are here for you, and I am sending light and love to Canada right now. Hopefully you'll find a short break from this all.
AnnaBananaRuntoparadise
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Thanks SKR for backing me, we're talking.
Shroomy, also, why not start a thread in the dark side?
Many will help, feel free to continue to PM me
Rtp xx
Shroomy, also, why not start a thread in the dark side?
Many will help, feel free to continue to PM me
Rtp xx
Shroomy, I can understand how you feel. A lot you wrote on your post I can relate to a lot. I won't go into me but let's just say despite differences, we feel the same so you are not alone, ok? If you'd like to ever talk we can PM. Ill tell you more there. I know you prob feel alone but you're not. I don't even know you and I care and can sympathize cause I feel it too and knows how it feels. Lease hang in there and try to stay up.
DixiChik
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Heartfelt sadness for ALL who are going through tough times, emotionally and physically. I just want to say that YOU ARE NOT ALONE...ever. You are among a circle of friends here. We understand. We care deeply.
I refer to the suicidal feelings as black dog (of doom) vs. white dog (of hope). It's a vicious battle with never-ending pain "un-managed". Which dog wins? The one I feed the most. Black dog is gnashing his teeth and wailing right now. White dog is hunkered down in the corner of my mind, whimpering and peeing himself. It takes everything in us to starve out the blackness, while nurturing the hope and light that things will get better.
Healing hugs to each of my CP peeps...I keep y'all in my heart!
I refer to the suicidal feelings as black dog (of doom) vs. white dog (of hope). It's a vicious battle with never-ending pain "un-managed". Which dog wins? The one I feed the most. Black dog is gnashing his teeth and wailing right now. White dog is hunkered down in the corner of my mind, whimpering and peeing himself. It takes everything in us to starve out the blackness, while nurturing the hope and light that things will get better.
Healing hugs to each of my CP peeps...I keep y'all in my heart!
CfZrx
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MiCasa, did u ask your doc for a cheek swab genetic test? You could find out that a certain med is right for you, and have evidence to present to the insurance company if its expensive. I found out methadone is great for me this way. MS Contin seems like advil now that i tried methadone.
Runtoparadise
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^@Shroomy, you took my lengthy PM & in response turned it around into exactly what I Wasn't Saying. How did you manage to do that?!?
I wasn't disbelieving your pain at all !!
I don't have time to clarify at this time of the morning,-other obligations, but I will PM you later.
Rtp
I wasn't disbelieving your pain at all !!
I don't have time to clarify at this time of the morning,-other obligations, but I will PM you later.
Rtp
^ I keep wondering the same thing regarding methadone. But you know what holds me back the most? The fact that many years ago when I was a junkie nut bag I managed to steer clear of an opiate/heroin habit which I saw a few friends lost to and some others ended up on methadone and I looked at their lives and would think "thank fuck you left that alone man". To get on methadone now feels like I would be selling out - and yet I spend a fortune on oxycodone to supplement the amount I'm prescribed. But the pain relief I hear that Methadone gives is very tempting.
Runtoparadise
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Has anyone here looked into 5-htp to help there pain /mood?
There's a lot of info out there, but what's accurate & what's not is difficult to know.
I've also recently made massive changes to my diet, only whole, fresh foods.
Not exactly paleo, but loads of veg,- alfalfa, red cabbage, spring onion, baby spinach, brightly coloured capsicums, snow peas, avocado etc, with some red meat or oily fish.
I feel that's another direction other than physio & psych etc that potentially will help from the inside out.
Attack the "black dog" from every possible angle!
Rtp
There's a lot of info out there, but what's accurate & what's not is difficult to know.
I've also recently made massive changes to my diet, only whole, fresh foods.
Not exactly paleo, but loads of veg,- alfalfa, red cabbage, spring onion, baby spinach, brightly coloured capsicums, snow peas, avocado etc, with some red meat or oily fish.
I feel that's another direction other than physio & psych etc that potentially will help from the inside out.
Attack the "black dog" from every possible angle!
Rtp
CfZrx
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Hi SKR, my reason for going with methadone (even though I know it's hell to get off) was that I will definitely be on pain meds until my death, so I just want the one that works best for me. I take 5mg 3X daily, which is a baby size dose,lol. Combined with my cannabis infused coconut oil capsules, some aleve, and a few herbs like cats claw and jamaican dogwood and believe me, I'm lovin it. I spent 2 years doing what your doing with your oxys, only I was prescribed ms contin 15mg 3X daily, but I too was spending thousands buying 60mg mscontins and first I plugged them, then I injected them using Sterifilt filters. And that didnt even eliminate the pain like my tiny methadone script
I know how scary it can be when you see the dudes on 150 mg 'Done plus benzos If your burning up all your money on pills and smack like I did, then you might need to rethink your plan, right? peace
DixiChik
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Rtp...I've read some articles on the 5-htp, but have not tried it. It reads as an appetite suppressant, with possible relief from depression, pain of Fibromyalgia. It is not recommended for use beyond 12 weeks, if I understand correctly (and not to be taken in conjunction with SSRI.
I could definitely use help with pain and depression (beyond my Zoloft). I have a hard time keeping weight on (yep). I eat a very bland diet, with little to no meat and no dairy. The mere act of eating hurts my gut so badly, I tend to avoid it. I tend to "graze" small amounts throughout the day. I don't have Fibromyalgia, but I would think if 5-htp enhances serotonin, it would have to boost your "feel good" hormones. I could use some of those "feels"...How about you?
I could definitely use help with pain and depression (beyond my Zoloft). I have a hard time keeping weight on (yep). I eat a very bland diet, with little to no meat and no dairy. The mere act of eating hurts my gut so badly, I tend to avoid it. I tend to "graze" small amounts throughout the day. I don't have Fibromyalgia, but I would think if 5-htp enhances serotonin, it would have to boost your "feel good" hormones. I could use some of those "feels"...How about you?
I could def Dix. I tried 5-HTP about 9 years ago and for me it did nothing at all. So that's just me. Maybe bc I've always been bipolar and it wasn't strong enough. I think it may have some nasty side effects but I'm not sure and I know it has a lot of interactions. Wouldn't hurt to try it I guess. Hope you feel better soon!!
DixiChik
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Hey closeau, my brotha...How are you coming along? I think of you often, with the loss of your mom. I always say that when my arms can't reach far enough to hug, I hold you in my prayers. I really do. I'm here if you need a shoulder to lean on. I care.
Yea, I take Zoloft so I wouldn't be able to risk the interaction. But perhaps it can be helpful to RTP, along with her modified diet. It's good to share our thoughts and ideas, in hopes of finding some things that actually ease some of our pain and lift a bit of the depression. I can actually cope better with my chronic pain IF my mood isn't rock bottom. I've been on Zoloft for years and it's been a lifesaver. However, I think it's run its course for me. There has to be a more effective AD, somewhere out there!
Yea, I take Zoloft so I wouldn't be able to risk the interaction. But perhaps it can be helpful to RTP, along with her modified diet. It's good to share our thoughts and ideas, in hopes of finding some things that actually ease some of our pain and lift a bit of the depression. I can actually cope better with my chronic pain IF my mood isn't rock bottom. I've been on Zoloft for years and it's been a lifesaver. However, I think it's run its course for me. There has to be a more effective AD, somewhere out there!
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