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Old 11-22-2012, 06:46 PM   #1
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Time to cross Nucynta off my list?

Hello, everyone! Super newbie here!

I am completely new to this forum and forums in general, so please forgive me if I posted in the wrong section or referenced something prohibited. I'm not completely foreign to the concept of forums - I always check out what others have said about certain drugs my doc will put me on just to get a better idea of what to expect.

I'm not exactly sure how in depth I should go, but basically I've been in chronic pain for the last decade as a result of a horrible accident (which wasn't my fault). Today, I basically wish I could rip my spine out of my body and replace it with a new one. I'm so unbelievably frustrated and I hate the thought of living the rest of my life in pain. I also hate the thought of depending on pills to get by...

About four years ago, I started to really feel the effects of the accident and I started seeing my PMdoc regularly. I've gone through the gamut of tx, injections, epidurals, chiropractor, acupuncture, etc. For drugs...let's see...I went from Vicodin to Ultram to Lyrica to Percocet to Morphine to Opana to Dilaudid and so on (not necessarily in that order). For a good year or more, I took oxy, along with muscle relaxers and sleep aids. Pretty soon, my tolerance shot up and I found myself taking an extra pill here and there, obviously against the rules, and not having enough to last me. I told my doc about this, doc got mad (rightly so) and basically said we're getting you off these. Now we're trying to figure out what will get me by. Tried the Butrans patch (20mcg), hated it. Minimal relief, wouldn't stay on, too big, etc. Next, I went to the dark side and tried the Fentanyl patch (12mcg) for about 3 weeks, which was too good to be true. Never had I experienced relief like that, but I felt like a complete space cadet. Last but not least, I am currently taking Nucynta (75mg) 3x per day, and I have to say that I'm not a fan of this either! The plan is to switch to ER soon, and use 50's or 75's for breakthrough.

This is where I could use the most feedback. The Nucynta is not like any of the opiates to which I have been prescribed, which has its pros and cons. The infamous euphoric feeling is minimal, which is good for me - I don't want to feel it kick in, I just want it to work. The major problem I have is that I sleep like a zombie on it! Naturally, I'm a night owl and have problems falling asleep, so when I do doze off, I can literally sleep until 4 or 5pm the next day and probably go for another couple hours. I also don't like the cognitive aspects of it. The 75mg doesn't feel strong enough, so one day I took my next dose a few hours earlier than normal and it made me feel weird. Don't think I'm crazy when I say this, but a number of times when I've been typing away at my laptop, I will catch something in my peripheral vision, which makes me jump. With each startling episode, I have that fight or flight type reaction. I recognize that people have experienced similar side effects, but does this sound normal? I'm going to ask my doc to take me off, I think, but I don't know what to do next. This was the first time I had heard of Nucynta, so I imagine there are other drugs out there that have similar effects, right? Does the coma-like sleep ever go away?

I'm really trying to do things the right way, but I want to manage my pain as entirely as possible with the least side effects (in a perfect world, haha). I like the ER aspect, as I get consistent relief, but is that a path I want to go down? When I was on the Fentanyl patch, I would turn my neck and still have that oh-so-annoying surge of pain, don't ask me why. That said, I had in my mind, "well, if I was using 25mcg's, I'd be ok." On the other hand, the shorter acting drugs kind of work, but (honestly) I don't trust myself with them just yet. I'm totally fine with the Nucynta, I actually take less than I'm supposed to, but I'm miserable. I seriously can't win.

My professional life is quite stressful and way too important to me to let myself fall into serious addiction. After a long day, I wouldn't look forward to getting home and catching up with friends/family, I'd crave that sense of well-being and mild pain relief. I've removed myself from how I used to live - I'm not who I used to be.

Sorry for such a long post. If anyone has any suggestions or words of wisdom, I'd greatly appreciate it.

Last edited by dv8er; 12-14-2012 at 06:44 PM.

 
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Old 11-22-2012, 09:11 PM   #2
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Re: Time to cross Nucynta off my list?

I take nucynta 200 ER. It took a month for me to adjust, very happy I waited. I am down a lot in meds and I believe nucynta is the main reason. But everyone reacts different to meds.

 
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Old 11-22-2012, 10:07 PM   #3
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Re: Time to cross Nucynta off my list?

dv8er, where is your pain located?

 
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Old 11-23-2012, 07:43 AM   #4
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Re: Time to cross Nucynta off my list?

I liked Nucynta. It provides Cymbalta-like pain relief because it has an SNRI element to it so it is like taking Cymbalta + a mild opiate. It is sedating because of this not the opiate. That said, I took it in combination with Prozac and developed a Serotonin syndrome. Not fun. It is potentially life-threatening and it comes on insidiously. NEVER combine Nucynta with ANY SSRI antidepressant (Prozac, Zoloft, Celexa, Effexor, Paxil) Wellbutrin is ok.

 
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Old 12-07-2012, 11:16 PM   #5
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Re: Time to cross Nucynta off my list?

Hello Everyone:

I am sooo sorry it has taken me this long to respond.

I will touch on each respondent's post, then update everyone on my current condition.

@CaliGirl - your message scared me, but THANK YOU! I fluctuate between 50-75mg per day of Sertraline (Zoloft), and I was taking 75mg 3x per day on the Nucynta. I literally thought I was going crazy. I would see things out of the corner of my eye, I had intrusive thoughts, paranoia, you name it. Up until last Friday, I took it at a lesser dosage than prescribed, b/c scared me so much. What made it even worse was that I had no other pain meds, except a leftover fentanyl patch, which I didn't use. I'm going to have to research Cymbalta. Wellbutrin is out for me. Thank you so much for your post!!

@nochange - thanks for the question!! my pain resides in the upper neck area progressing across my shoulder blades on either side.

@deanh - that's great news to hear Nucynta worked so well for you! I don't know if you read CaliGirl's earlier post, but my negative reaction might be attributed to the fact that I take an SSRI.



So, update on my progress. I stopped taking Nucynta last week, and once again, my doctor suggested I try and go without medications. We chatted about how I'm going to have to be on these the rest of my life and I hate that, but I refuse to live in constant pain. After a long discussion, we decided to return to the one drug that worked the best - duh, duh, duh....fentanyl. My first stint with the fentanyl patch (12mcg) lasted approximately 3 weeks, but my motivation decreased, which is not even something I can consider at this point. This time, we agreed on trying half a patch (6mcg) to be changed every other day, along with norco 10/325 mg 2 x's a day for breakthrough.

Well, it has been a week since we decided on this regimen, and I can honestly say, once again, I'm not happy. The only thing the fentanyl succeeds in doing is knocking me out into a comatose sleep for hours, and the 2 norcos could be tic tacs for all I know. Again, this combo doesn't work. I wait to take the norco until night, as that is when I am in the most pain, but even taking them within close proximity to each other, I am still not getting enough relief. I'd rather not use the patch if the only thing it does is make me sleepy. Now, when I move my head to either side to crack my neck or release some of the incredible buildup of tension, I can feel in my back a couple inches from the center toward the left side, an odd tightening, like there is a string inside that might rip if I extend it too far.

I feel like I'm falling apart.

Last edited by dv8er; 12-09-2012 at 02:38 PM. Reason: removed potentially identifiable info.

 
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Old 12-08-2012, 09:23 AM   #6
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Re: Time to cross Nucynta off my list?

dv8er-

I'm not sure if you have mentioned these items but long ago when I was trying to find a good fit for managing my pain it was suggested that I try Hydroxyzine (Atarax). I found that it was a very good addition to the OxyContin that I was taking at the time. The OxyContin is long gone but I continue to use the Hydroxyzine with my BT meds. It does cause quite a bit of drowsiness initially but that effect subsides over time. I found no relief from Cymbalta -actually I have a near 100% failure rate with all of the SSRI's, SNRI's, and SNDRI's. I've given up on that entire class of meds -except one, an SSRE called Tianeptine (Stablon) which I would like to try. My Physician added Nortriptyline and Gabapentin both of which were helpful. I also have Klonopin and Seroquel that I use on a PRN basis -when I'm really flipping out with anxiety. So, bottom line. Your pain med of choice can be augmented in numerous ways with several drugs that may add up to a good result. Nucynta may be one of them.


Iso~

 
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Old 12-08-2012, 09:04 PM   #7
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Re: Time to cross Nucynta off my list?

Quote:
Originally Posted by Isotope View Post
dv8er-

I'm not sure if you have mentioned these items but long ago when I was trying to find a good fit for managing my pain it was suggested that I try Hydroxyzine (Atarax). I found that it was a very good addition to the OxyContin that I was taking at the time. The OxyContin is long gone but I continue to use the Hydroxyzine with my BT meds. It does cause quite a bit of drowsiness initially but that effect subsides over time. I found no relief from Cymbalta -actually I have a near 100% failure rate with all of the SSRI's, SNRI's, and SNDRI's. I've given up on that entire class of meds -except one, an SSRE called Tianeptine (Stablon) which I would like to try. My Physician added Nortriptyline and Gabapentin both of which were helpful. I also have Klonopin and Seroquel that I use on a PRN basis -when I'm really flipping out with anxiety. So, bottom line. Your pain med of choice can be augmented in numerous ways with several drugs that may add up to a good result. Nucynta may be one of them.


Iso~
Hi Isotope,

Thanks for your reply. I actually have tried Hydroxyzine before, but it wasn't for pain. I actually had an allergy attack of some sort, broke out in hives, and hauled a$$ to the ER. The doc prescribed Hydroxyzine for the itching. I believe it is also used for anxiety, which you mentioned. When you said "flipping out," are you referring to panic attacks? Why did you stop taking Oxycontin?

I am 99.9% confident that my PMdoc will never prescribe Nucynta to me again. Not after how I described the negative side effects I experienced. I don't want to take something that impairs my cognitive functioning to that extent. I can't remember if I mentioned this in a previous post, but my short term memory was nonexistent while on the Nucynta. Literally, I would be writing a sentence and I'd go blank. I would actually sit there and challenge myself to remember, which I couldn't do. I didn't experience nearly enough relief for me to even think about coping with the side effects.

I'm scheduled to see my PMdoc soon, but I might bump it up earlier b/c that unmistakable feeling you get over time as an epidural(s) fades, needs to be addressed. Once again, I'll be returning with a desire to try something else, which will frustrate him even more. I asked if I was an annoying pt and he took a second too long to respond, but he said I was a frustrating case in that he doesn't know how to treat me.

Like you said, Isotope, having the ability to figure out what combination of drugs would work best for me is what I would love, but I actually feel like he's giving up on me. There is another PMdoc at the practice I go to, and he is one of the best in the area. He was the one that started prescribing meds that actually worked for me. It was definitely trial and error, but when I said taking morphine makes me sick, instead of saying, cut the pill in half, he worked with me to find something comparable with less side effects. The doctor I see, only because it's easier to make an appointment with him and our schedules match better, knew I didn't want to go back on the Fentanyl patch, but had me cut it in half, which relieves less pain than a cough drop. When I was talking to him, I did everything within my power to hold back tears because trying to explain pain is extremely difficult. I asked him if he knew what it felt like to have chronic pain (and at my age), and he shook his head.

I think I might schedule a consult with the other PMdoc I mentioned. A fresh pair of eyes on my case might be a good thing.

I'm curious...how has everyone been able to determine their 'just right' combination of medications where the negative side effects outweigh the positive? What combination of meds has worked for those who have similar cervical / should pain?

Thanks for reading!

Last edited by dv8er; 12-09-2012 at 02:42 PM. Reason: removed identifying info

 
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Old 12-08-2012, 09:18 PM   #8
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Re: Time to cross Nucynta off my list?

Dv8er-

Some of us never find a workable combination. I think everyone does the best they can with their situation. For me, my PCP is my go-to Doc, no PM Docs. I tried most of the 'Long Acting' formulations... they needed to be dosed 3x/day so I figured why bother with them and their premium price. After Opana I switched to generic Oxymorphone 4x/d and it's been a perfect fit with Hydromorphone BT. Now, no insurance. Can't afford Oxymorphone so I'm taking Oxycodone 30's q.i.d. Not nearly as good as Oxymorphone, plenty of feel good and energy but low on the pain relief. Anyway, Hydroxyzine helps tamp it down, prevent panic, Gaba helps the sleep, and again, Seroquel is for when all else fails. At my next med rotation I would like to try either Buprenorphine or Levorphanol. In the interim the Oxycodone is workable but I can see how people would become wildly attracted to the 'other' non-pain relieving effects, if you get my drift. Feels I could easily double my 120mg/d intake and be perfectly functional.

Iso~

 
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Old 12-08-2012, 09:27 PM   #9
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Re: Time to cross Nucynta off my list?

A PM told you to "cut" a Fentanyl patch? Wow. So much for PM's knowing anything about what NOT to do. Any mere mortal can figure that one out....

Go find a good PCP and start there.... JMO

Last edited by Isotope; 12-08-2012 at 09:31 PM.

 
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Old 12-08-2012, 09:55 PM   #10
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Re: Time to cross Nucynta off my list?

dv8er, hello. I remember what you said....this driver ruined your life. I totally agree with you. I bet now you are very careful who is driving you. Back then, we didn't. We have similiar situation here.

I know, it's a nightmare to have neck pain. How old are you? I've been suffering like that for 7 years already.

You should leave the fentanyl patch when you are older...you know what I mean...those are the "big guns". They usually give them when every other med failed. I have never tried it. I wait with that.

Have you tried oxycontin?
How was Lyrica? usually lyrica helps with sleep if you cannot sleep so perhaps this could be a good choice.
Also, I have tried Topamax for this neck pain and it really helped. Just that I had stomach pain. I am worried about ulcer.

 
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Old 12-09-2012, 12:06 AM   #11
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Re: Time to cross Nucynta off my list?

Yup! I had a similar response, internally, and when I questioned him on the safety of cutting a gel patch, he said that they make a different kind of patch that can be cut. When I was at the pharmacy getting the rx filled, the pharmacist called my name to get my attention and said something along the lines of..."you know this is....cut in half" I couldn't make it out, but it sounded like she was reconfirming the script's instructions, so I agreed and nodded my head, "yes." now that I think about it, she might have been saying something more along the lines of what you mentioned, Iso! When I got home, I did a little research on the cutting of patches, and I believe I came across only one instance of cutting being acceptable. It said that, as long as your doctor gives you the okay, you can do it. I rechecked the rx boxes (I got 2 boxes w/ 5 patches to last me 20 days) and everything looked ok to me. I put my first patch on and, bam, I'm out. That was a Friday, and I definitely slept the majority of the weekend and still felt tired. I attributed it to the patch. I think it was around Wednesday that I began to get suspicious. Before I began the Nucynta, I was using the fentanyl patch (12mcg) for three weeks. I stopped using the patch on my own and still had a couple left over. I quickly grabbed one from my new box and the old box to compare - they are EXACTLY THE SAME! I wasn't sure what to do, as I already feel like the biggest complainer, and, this is bad, but I figured if I did accidentally get a surplus of medication, a half a patch at 6mcg probably wouldn't kill me. Thanks for speaking up on this, Iso, I wasn't sure what was going on, but my concerns definitely feel more validated now.

I certainly won't be able to afford seeing my PMdoc once I graduate from school, as I'm still covered under my mother's health insurance. I pay a $10 copay for any service whether it is an epidural, facet block, trigger points, office visit/follow-up/consult, etc. If I was to see my PCP, it would be the same amount of money. I have to get epidurals every 3.5-5 months, without fail. the pain is absolutely unbearable. As I mentioned before, I can feel it coming back. I had him do some trigger points during my last office visit, and this is the second time I feel that trigger points actually exacerbated my pain.

Oxycontin is probably one of the few drugs I haven't tried. I think in my first post I mentioned that I've been prescribed morphine, dilaudid, percs, hyds, opana, etc. I'm actually starting to wonder if it's possible that my receptors don't respond to opiates like they should. After my accident, I remember being at the hospital and the only thing morphine did was make me itch a little and feel nauseous. I believe they stepped it up to dilaudid, which, from what I can recall, kept me quiet.

I had a series of health complications a few years later resulting in my being hospitalized for random weeks at a time. It was at this point that I felt the most excruciating pain in my life. I don't have kids, so I can't say it was worse than childbirth, but I was in so much pain I was screaming bloody murder in my hospital room. I once remember hearing people complaining and moaning in the hospital ER and I'd think to myself, oh suck it up. But now, oh wow, I see things from a completely different perspective. The only thing that calmed me down was fentanyl, surprise, surprise. I had my tonsils out a couple years prior, which is horrific as an adult, and I ended up in the ER and fentanyl was what they gave me right away. So, it seems that fentanyl is one of the only drugs that works for me, but I cannot stand the side effects. If I'm laid out in a hospital bed after surgery, great. Not now, when I need to be somewhat functional. It has been between 1 and 2 years since I stopped taking opana, and the only reason I did was because it made me sweat at night. Of course, looking back, beggars shouldn't be choosers, but I'll take night sweats over an f-patch enduced coma any day.

I'm in my late 20's, early 30's. I'm trying to be careful about not giving out but so much identifying info. My accident occurred in 2003, and I still have a pretty good memory of that night compared to any other night that year. You are definitely right about me being uncomfortable sitting in someone else's car as a passenger. I've gotten better about getting in cars with anyone over the years, but what made it worse was that my friends would torment me and rev their engines, take off, and do all sorts of stupid things with me in the car. They aren't my friends anymore. I don't even think the driver was a "friend" to begin with - who says, "I got a brand new Audi outta the deal" after nearly killing a passenger. So wrong. I wish I could sue again for the pain and suffering I've had to endure for the last several years, or at least my medical bills.

As I mentioned previously, I haven't tried oxycontin, not even recreationally. It was quite popular when I was in high school/college, but something about this drug scared me. I agree the fentanyl patch is for the big boys. that's kinda how i feel about oxycontin. i would prefer not having to use the patch or take meds, but sometimes it gets to be too much. maybe 4 years or so ago, i used to look forward to going to sleep and waking up b/c the pain would be gone, until the next evening. Now when I wake up, it's the same, if not, worse. I don't know how many damn orthopedic pillows a person can have... haha!

Take care!!

 
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Old 12-10-2012, 12:08 AM   #12
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Re: Time to cross Nucynta off my list?

D-

Nothing scary about OxyContin but the name and the rap that it has gotten. It's just Oxycodone in an expensive slow release tablet; they used to do some sort of laser drilled holes thing in a 'ghost' plastic shell that some could see in the toilet... Just my opinion but -it's all a rip off... Check out the prices of slow release Dilaudid, it's called Exalgo. It's thousands of dollars! I much prefer immediate release products, generic if possible. I don't mind controlling my dosing, when, and how much... It's more empowering for me.

However, for some people, MS-Contin, OxyContin, Exalgo, and Opana are a good fit, they keep the blood level more stable than self-dosing and they cut down on the frequency of taking pills. You may want to investigate Methadone or Buprenorphine (Subutex, Suboxone, Butrans Patch). Look them up on Wiki.

Iso~

I just reread and you have tried Butrans... For Fent the only problem was 'space cadet'? Remember, nothing is perfect and it usually takes more time to adjust to any new medication. If Fent worked I would say go back to that.. IMHO. Hydrocodone and Oxycodone tend to be pleasurable which is why people have problems with them in the long run... Morphine of course has tons of side effects at doses higher than 80-100mg a day. I found Oxymorphone (Opana) to be the best balance. I use Hydromorphone (Dilaudid) for BT -it's very fast acting but the conversions are overly optimistic for oral intake -I consider it to be on the same potency level as Oxymorphone, 10mg = 10mg. I haven't tried Buprenorphine but I hear it works well for many people...

Last edited by Isotope; 12-10-2012 at 09:02 AM. Reason: more, more, more

 
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Old 12-12-2012, 12:47 PM   #13
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Nucynta is off my list.

Quote:
Originally Posted by Isotope View Post
D-

Nothing scary about OxyContin but the name and the rap that it has gotten. It's just Oxycodone in an expensive slow release tablet; they used to do some sort of laser drilled holes thing in a 'ghost' plastic shell that some could see in the toilet... Just my opinion but -it's all a rip off... Check out the prices of slow release Dilaudid, it's called Exalgo. It's thousands of dollars! I much prefer immediate release products, generic if possible. I don't mind controlling my dosing, when, and how much... It's more empowering for me.

However, for some people, MS-Contin, OxyContin, Exalgo, and Opana are a good fit, they keep the blood level more stable than self-dosing and they cut down on the frequency of taking pills. You may want to investigate Methadone or Buprenorphine (Subutex, Suboxone, Butrans Patch). Look them up on Wiki.

Iso~

I just reread and you have tried Butrans... For Fent the only problem was 'space cadet'? Remember, nothing is perfect and it usually takes more time to adjust to any new medication. If Fent worked I would say go back to that.. IMHO. Hydrocodone and Oxycodone tend to be pleasurable which is why people have problems with them in the long run... Morphine of course has tons of side effects at doses higher than 80-100mg a day. I found Oxymorphone (Opana) to be the best balance. I use Hydromorphone (Dilaudid) for BT -it's very fast acting but the conversions are overly optimistic for oral intake -I consider it to be on the same potency level as Oxymorphone, 10mg = 10mg. I haven't tried Buprenorphine but I hear it works well for many people...
Hi Iso,

Thanks for your reply. I couldn't agree with you more regarding the ability to choose my own meds/dosage. I feel like my doctor gave me a little freedom to decide last time I saw him, but what I decided on isn't enough. I hate the feeling of him possibly thinking that I'm not using them correctly. It makes me feel terrible. I think he perceives me as a child because I'm still in school, I'm typically upbeat and appear carefree, and I look very young (ppl don't take me seriously oftentimes). I don't look like someone that should be in the amount of pain I'm in. If only that was the case on the inside. I think I mentioned last week that when I asked him if I was a high maintenance patient he responded that I was essentially frustrating. I don't want to be that patient that comes in and everyone groans and I feel like that's what's happening. I was able to make an appointment with a PM doctor I have yet to see in the practice for tomorrow, which I'm looking forward to. Also, I have an appointment with the doc I saw a couple years ago, and my normal doc next week, with my regular doc being the last. I left messages w/ everyone so it doesn't seem like I'm being sneaky. Plus, my info for the last several years is in my chart.

I'm going to start trying to keep an open mind about these meds, and definitely do my research. Someone responded to a post I made the other day and mentioned Mylan. I had no clue what he/she was talking about. Once I did my research, it made more sense. That's something I definitely should have known, especially when it came down to my doc telling me to cut a patch in half. I didn't realize there were different types. Also, I've read some positive things about Tramadol and Gabapentin. I've taken Tramadol before and remembered it not being very effective, but perhaps I wasn't given a strong enough dose. I haven't done any research on Gabapentin, but I plan to before my appointment tomorrow. I remember having a positive experience with Opana, but it was a pain in the a$$ getting my insurance to cover it. Also with Oxycodone, but after a year+, I had built a tolerance.

My drowsiness on the patch has decreased significantly, and I'm using the full patch now (12mcg). I think my body just needed to get used to it. I have found that flexeril at night helps a little, too. I forget I have them b/c I don't like taking them during the day.

 
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Old 12-13-2012, 06:18 AM   #14
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Re: Nucynta is off my list.

dv8er, by the way, what happened to the driver?
I bet he is fine and not suffering from chronic pain at all.

Cars are not very good invention if they can cause chronic pain. I know it's the person who drive it and not the car but still. If cars can cause chronic pain then they are not good invention, period.

They should have kept those carriages...like I said before. THey didn't cause chronic pain.
So what if they were slow? it's better than suffering from pain.

I wish life gets better for you. I also have neck pain, just like you caused by a car accident. Never thought it will happen to me.

 
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Old 12-13-2012, 09:31 AM   #15
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The dangers of life

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If your theory were correct; There are many, actually, there is an infinite universe of people, places, and things that can cause Chronic Pain: Cracks in sidewalks, stairs, houses, cities, the mind, the body, and the Planet! If the earth were stripped clean of all that sits on it one could still trip in the wet muck and end up disabled and in Chronic Pain. Bottom Line is that life is a no guarantee experience, an amazing chemistry mistake that resulted in a (now) sickly spinning orb with walking talking ooze monsters on it that we call people -each trying to navigate its joys and its horrors in a hundred years or less. Just my stream of consciousness opinion of the moment (not starting a religious debate, all respect to opposing thoughts).


Iso~

 
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