opioid resistant pain

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skeye
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Date Joined Mar 2008
Total Posts : 2976
   Posted 4/29/2009 7:43 AM (GMT -7)   
Does anyone know if you can be deficient in the opioid receptors in your brain? We are pretty sure at this point that I do not respond to any opioids & I am just at a loss as to why and what I am supposed to do to control this horrific pain. Anticonvulsants, antidepressants, and other non-opioid medications commonly used for pain do not work for me either. If the fentanyl patch I'm on now doesn't do anything for me, then we know that my brain doesn't respond to opioids, rather than having an absorption problem.

Doc is looking into things like ketamine infusions & lidocaine infusions, but I don't know how proven they are & they really scare me. But I don't know what I am supposed to do anymore. Nothing seems to help me, and if anything my pain has been getting worse over time (my function certainly has been). I don't know how long I can keep pushing myself through with no immediate hope of any relief. I been having such a hard time getting out of bed lately because I just hurt so much & I am so exhausted and am not seeing well. Is it too much to ask for just a tiny bit of relief? To get me down from my constant 7/8 to maybe a 5? I just feel so helpless.

Skeye

Sorry for the depressing post, that's just how I've been feeling lately!

Tony McGuire
Regular Member


Date Joined Feb 2009
Total Posts : 483
   Posted 4/29/2009 8:02 AM (GMT -7)   
Skeye,

I believe opioid resistance was why I got moved to Methadone+Morphine.

But I could be all wet.

Fetanyl patch did NOTHING for me; didn't touch the pain AT ALL.

Of 3 nerve blocks, I felt NO relief. It was like he hadn't even done the injection, other than the pricks I felt as he did the locals for the main injection.

Does this relate at all to what you are talking about?

If so, I can tell you that I still get no more than about 50% relief at best. But at least it is tolerable most of the time.

(Taking another look at your post. Moving to a 5 is almost exactly what I usually get.)
Wife: Liz, the choice of a lifetime
Dogs: Koshka Prayer & Chomp Prayer


Tony McGuire
Regular Member


Date Joined Feb 2009
Total Posts : 483
   Posted 4/29/2009 8:06 AM (GMT -7)   
Skeye: On top of those, I also take a regimen of Lyrica and Cymbalta for the pain. Don't know if that would be a must on your side, but at least another thing to explore and another option.

That, of course, is saying that any of this is useful to you and your doctor at all.

But at least it might provide some talking points to bring up with your doctor.

If your doctor thinks it might pertain, maybe a call between the two could work to help you.
Wife: Liz, the choice of a lifetime
Dogs: Koshka Prayer & Chomp Prayer

Post Edited (TonyMcGuire) : 4/29/2009 9:09:51 AM (GMT-6)


The Reverend
Regular Member


Date Joined Apr 2009
Total Posts : 66
   Posted 4/29/2009 8:17 AM (GMT -7)   
G'day Skeye I have found with Morphine that I must take additional pain relief with it just by itself it does didly squat. Tremil or codien and plaquinal togeather with morphine sort of work but anyone by itself does not do much. ttyl

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 4/29/2009 10:15 AM (GMT -7)   
Yes, Tony, your experiences relate. I have been on vicodin, oxycodone, oxycontin, and dilaudid all with little to no effect (and I'm not talking small, or even moderate doses, we really pushed my limits). We are trying the fentanyl patch now to make sure that I don't just have an opioid absorption problem, since it bypasses the liver & enters the bloodstream directly. So far I've not noticed a thing, but I am only on my second patch, and we started off on the smallest patches, which is no where near the equivalent dosage of dilaudid that I was taking.

I also have not had any luck with nerve blocks. There isn't a direct way to get to the site of my pain, but there are two block which indirectly affect those nerves: the sphenopalantine block & the stellate ganglion block. I had 2 sphenopalantine blocks & they never did a thing. I had 3 stellate ganglion blocks. The first seemed to help somewhat for about 3 days, but none of the subsequent blocks had any effect, and I know that the last one was done as well as, if not better than, the first.

I have been on cymbalta & it didn't do a thing. I cannot currently take lyrica because of it's side effects, but I was on neurontin, which is pretty similar, for 6 mo +, and got up to 1900 mg/day + and never saw any effect. I've basically been on every non-opioid medication used to treat CP, as well as many different steroids and NSAIDs, and did not get any relief from any of them. My body just seems to be incredibly resistant to medication (or incredibly prone to side effects), there is no in between with me. I guess my body just has an ALL or NOTHING response, and when it comes to treating my pain, my body chooses the "nothing" response, much to my dismay. I just don't know what to do anymore... I don't know how to make my body LISTEN!

Skeye

Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 4/29/2009 1:57 PM (GMT -7)   
Oh Skeye, I wish I could think of something to say to you that might help just a little! I feel so incredibly sad about your sittuation and that no one has been able to help you. I don't even really know you but sometimes find myself wondering if anything good has happened for you yet, then I say a little prayer for you and some others here on our board who I know are suffering so much more than I am. I just can't imagine how hard it must be for you, having your hopes get up w/ each new doctor only to get shot down again. You must be a saint to be feeling so badly and still be w/o an answer and still think of and write such kind words of encouragement to all of us here. I read your post on my last post but instead of answering there, I came here where I hope you could read my words and know I am thinking about and praying for you every day! Please know that lots of us here think the world of you and that if we copuld do ANYTHING to help, we would!
Here's a big heavy bear hug for you coming from your friend. The pain will stop soon, I just know it will!
Pete
56 years old, Surgury, Radical Prostatectomy 8/20/03, PSA 6.6, Gleason 3 + 3 = 6, Adenocarcinoma extent (moderate) Stage & Margin:T2NOMX, No Metastases, Organ Confined, bone scan: Neg. 3 1/2 years of depression after surgery prior to Hypogonadizm DX, Testosterone Theropy> new 2/6/09> 400mg injections once a month. 56 and so glad to still be here to see my two sons grow up to be fine young men. They are both serving in the US Navy, one on the aircraft carrier USS John Stennis in port in Singapor and the other on a Gator Freighter USS Bataan stationed in Norfolk, Va. to be deployed to the Middle East in early May. I am one very proud (what they call me)> Big Pops! 


Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2282
   Posted 4/29/2009 4:28 PM (GMT -7)   
Skeye,
I don't know about resistance to opioids. I just wanted to share with you that ketamine in the past has been helpful to me. I am very sensitive to opioids, so I don't know whether or not it works better than other options for people who don't get any benefit from more traditional treatments, but I can say that it did help me with pain. As an added bonus, it has been studied & shown in at least some trials to be effective for treatment-resistant depression. I don't know whether or not it was ever FDA approved for depression, but I was going to participate in a 2nd round trial, but was disqualified b/c of a congenital disorder.
So, maybe that would not be such a horrible route to go.

Hoping you find some answers soon,
frances

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 4/29/2009 6:49 PM (GMT -7)   
Skeye,
I'm late responding today but I wanted to get back to you, although I wish I had something to say to help. I am still going to believe that there's something out there for you. You may have to try some things like ketamine to see if they help.

I'm not sure about your question about opiod receptors, but it seems like a plausible thing. Yet I do know with some drugs - like nicotene, for example - it's possible to develop more receptors over time as you use some substances. That's why cravings can be so difficult.

What about that doctor who was going to present your case? Any trial studies you mght be able to participate in?

I so wish I could help more!

((((((((((((((SKeye))))))))))))))

PaLady

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 4/29/2009 8:44 PM (GMT -7)   
Thanks for your kind words Pete! I can feel your hugs & prayers! I'm no saint, but try to help others out when I can, because everyone here has done so much for me!

Frances, thank you so much for the info about ketamine infusions. I really appreciate any information I can get about it! I really don't know too much. I started doing some initial research, but then the end of the semester started to catch up with me. Hopefully I'll have a better idea of our future direction by the end of this week, or next week at the latest. My doc has been conferring with a PM in Boston & is waiting to hear back from her. If the ketamine infusion also worked for drug resistant depression, that would be an added benefit! I am pretty sure that I have that as well, as I have been through more antidepressants without much luck, especially of late (and as you can tell, I am quite depressed).
What I read about the infusions was that they were done over five days, do you have to stay in the hospital?


Palady, thanks for the hugs! I really need them tonight! Not only am I dealing with all this, but I just found out that my roomates have ditched me to live with two other girls next semester & the housing lottery is tomorrow... I don't think that they were even planning on telling me if I hadn't asked (I had suspected from the way they have been acting lately).
My ophthalmologist supposedly presented my case at the conference last week. I have been waiting to here back from him (I called him at the end of the week to relay the results of my visit with the neurophthalmologist). He usually takes a few days to return a call if it isn't urgent, but I got impatient today. I just feel so awful and am barely functioning, which is not good with exams coming up next week, so I called them up and left a message specifically asking about the outcomes of the conference, which he should hopefully get tomorrow. I don't know about any trials. I haven't looked into that too much. Maybe I should.

Skeye

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2282
   Posted 4/30/2009 12:17 AM (GMT -7)   
Skeye,
Yes, you would almost certainly need to be in a hospital. There are different ways to treat with ketamine, but the infusion treatments that I was going to get for the study were such that the patients often would hallucinate during for hours after the infusion. Obviously, that would not be safe outside of a controlled setting. Not everyone has that as a side effect, but it happens often enough & is quite severe when it does happen (though I'm told they are almost always very pleasant hallucinations) so that the person is not in touch with reality enough to be left unsupervised. There are also some medical reasons why they may need to discontinue the treatment, so you would need to be in the hospital for that.

There are 3 and 5 day treatments. For the study, it was a 5 day treatment & I needed to commit to an in-patient hospital stay of 14 days. I was told part of that was for the study, but it was also for safety reasons. Some people do get short term memory loss. From what I've heard & the few people I've talked with who went through it, the memory loss usually resolves after a couple weeks, with the exception that some people do not remember the time they were in the hospital (not the worst side effect, right? i mean, who really wants to remember a hospital stay. :)

The good news about it is that you would know within a week whether or not it is working. None of these crazy 6-8 week waiting periods like what you get on the a/d meds. That's why a lot of psych's like it for depression -- in theory, they could give it to people who are committed & by the time they're released they could be feeling happier -- and I do mean happier, it's not like a/d's where you just feel like a numb zombie if it works.
Anyways, I didn't get the ketamine for depression, just for pain & I assumed that treating my pain was helping with the depression, but maybe that was the ketamine. I'm on Actiq now since the ketamine wasn't covered by my new insurance, and the Actiq doesn't seem to have the same effect on depression as the ketamine did so perhaps it really was the med -- not that I'm complaining about the Actiq, it's 100% better than anything else.

I do so hope they can find something that can work for you. I know it's pretty scary to make the decision to go ahead with the ketamine infusion. I was terrified when they explained all the side effects to me & I had actually gotten some ketamine treatments in the past. But just take it all in & try to approach it logically. Is it worth losing a couple weeks of your life in order to have a long term remedy for your pain & depression? It's not a permanent cure, but it could last for many months at a minimum & it does have the possibility of lasting for years b/c sometimes it can kick the pain entirely out of your system, kinda like a re-start button & it can take quite some time for that pain to build back up.

The best part, from my experience & what I've been told, is pain usually generates from one place, but once it has spread there's no way to tell the origination point. By getting rid of all the pain, they might be able to tell where exactly your pain is coming from (e.g., which nerve, tissue or organ & an exact point on that body part).

idk. It's an unenviable decision you have to make, but I just wanted to offer you a bit of hope that there may be some real good that could come of it. It is an non-traditional treatment, so of course, check everything with your doc, but if it works even half as well as the NIH doctors told me their initial studies showed it would then perhaps this will finally be the magic cure to break the depression and pain cycles & to get you on a better path.

blessings,
frances

angel8
Regular Member


Date Joined Apr 2009
Total Posts : 109
   Posted 4/30/2009 2:39 AM (GMT -7)   

Skeye sorry to hear that your having such a time. I can imagine with all the med changing you are certainly have some w/ds thrown in ontop of trying to treat the pain.

I have thru the years seen folks who seem to be opiate resistant and whether Docs actually acknowledge this can and does happen I just dont know.

Like Tony in those I have known methadone has been their only choice and turned out to be a blessing as well. It most likely has to do with the fact it hits on a totally differing receptor then anyother opiate.

I have known more then a few who no matter what they were given or how high the dose absorption was a factor in its failure.

I have seen some success in the ketamine trials but not alot of maint. use for some reason and likely the danger of the med and its side effects.

I dont know if you have tried methadone as of yet and I am NOT an advocate of doing so until all else fails due to its potential to be most difficult to adjust to and near to impossible to ever get off of but it may be your last resort and blessing as well.

Good luck to you and I certainly hope they find something that works soon for you.


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 4/30/2009 8:57 AM (GMT -7)   
Frances,
Thank you so much for all the information, it is really valuable! The ketamine infusions really do scare me a lot, but at the same time I think that I am more afraid of what will happen if I DON'T do something. The hallucinations sure sound freaky though... I haven't talked about this too much with my doc, but he did put it on the table. I think we'll be looking into it more in the upcoming weeks. I'll have to do a lot of talking with my doc, a lot of research, and a lot of thinking. But your comments have been very helpful! It would be great if the infusion could knock out the pain & the depression at once!

Angel,
My doc has mentioned methadone before, and he almost put me on it once, but that was a while ago & he hasn't mentioned it since. He doesn't think that I am going to have luck with any oral pain med, although I know that methadone is very different. What I have read about it really scares me as well (okay, I admit, I am scared easily, especially by pain meds & treatments) & I'm not sure that it would be a great option for me, but we may revisit it in the future. Fortunately, through all my med ajustments & changes, I've only had w/d's once! And that was because I got really sick from the side effects of oxycontin & couldn't take any meds for 3 days. Other than that, we generally decrease slowly enough and/or my body is resistant enough that I thankfully haven't had any problems.

Skeye

Tony McGuire
Regular Member


Date Joined Feb 2009
Total Posts : 483
   Posted 4/30/2009 9:33 AM (GMT -7)   
Skeye,

What my doctor did to convince me was prescribe 3 days (9 pills), I think, maybe a week (21 pills), of 10mg Methadone all by its lonesome. It had enough effect that he convinced me to try Morphine IR as B/T along with it. Too, you may well not need as much as I; a call for your doctor.

And there is nothing saying that you would need a breakthrough reliever. Nor that Methadone would do anything. But at 3-7 days I have a hard time believing dependence could set in, either. Of course, that's something your doctor can surely answer.
Wife: Liz, the choice of a lifetime
Dogs: Koshka Prayer & Chomp Prayer

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