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Thread: Here We Go Again-locating New Pain Mgmt

  1. #1

    Here We Go Again-locating New Pain Mgmt

    Hi everyone,
    If you remember one of my threads was that I was trying to find a pain management doctor that really understands sci - well the hunt is on again. This will be our third try all the doctors my husband goes to they refuse to supply enough perocit for him to deal with the pain. Yes we knew it would increase over time like most meds your body gets use to them and you need more. One doctor even had the nerve to tell my husband that if he would walk around more or do more activity the pain will decrease, but my husband told him it doesn't work that way. No matter how much he does or doesn't do the pain is still there and getting worse everyday.
    Are the doctors allowed to give more than let's say 8 - 10 perocit per day? Are they afraid of getting into trouble? This is the only medication that really helps my husband. He's tried so many different pills but his body cannot cope with most of them. But the doctors insist he try them again. They just don't get it.
    So my question is can they prescribe more and more over time?
    Is anyone on a high dose of this medication?

    Thank you for listening and any response will be greatly appreciated.


  2. #2
    martedesco: I am not sure how much percocette a physician can prescribe. It really depends on how safe he feels doing it. I would suggest trying to find a SCI doc who is used to dealing with neuropathic pain. This may be difficult, but may be the best solution for your problem. His pain is real and it usually plateaus over time, but not for everyone. If you want to e-mail me back with where you live, I would be willing to try to give you some names of sci docs near you.


  3. #3
    Keep in mind that Percocet has Tylenol in it (that's the 'cet part, acetaminophen). Believe me, Tylenol is NOT something you want to OD on. There's also Percodan, which uses asprin instead of Tylenol. I'm not a medical professional, but if he needs higher doses then I'd be talking to my doc about the narcotic ingredient, oxycodone. It gets a lot of bad press these days because of abuse, but it's effective. You could still add a dose of Tylenol to that, but you could control how much is taken. I still think you're better off using something other than Tylenol on a long-term basis, such as asprin or ibuprofen. It's not that Tylenol is evil, but it does carry the possibility of a few more consequences than a lot of people recognize if used for a long time or if you take too much.

  4. #4

    Sci Nurse

    Thank you for your time- We live in Flushing (Queens) New York
    If you have any suggestions please send them
    I am getting scared that my husband will not survive if we don't find some doctor who understands about sci
    Again I thank you

  5. #5


    Hi David,
    Thank you for your imput. Yes we know about tylenol but my husband has his liver checked and everything is fine. He is already taking osycodone but this long release medication does nothing we need to find a doctor that understands sci - that's where the sci nurse comes in maybe she can help us locate someone close to home.
    Thank you,

  6. #6
    dr's are scared of losing there license for prescribing narcotics. if your husband can get diagnosed with "Chronic Intractable Pain" then they can prescribe more without so much fear ! check out this link:, it took me a long time to get the help i needed, then my dr. lost his license. back to being in pain for some time before i found a dr. to help me.
    good luck, i hope this helps...

  7. #7
    These are good solid posts.
    1) It doesn't matter who you go to, the federal regulators will have them scared to death they are going to lose their licenses if they treat you
    2) You aren't too far from Rutgers and there is a pain clinic at the Hospital for Special Diseases? right in NYC. You are even fairly close to Bethesda Maryland and the NIH. Of course, what it boils down to is that doctors spread it out. The regulators tend to go after doctors who give pain meds to a lot of people. so sometimes you wind up getting your prescription from a GP who doesn't treat a lot of pain and can be overlooked if he has one or two that he really snockers.

    In short, there is a lot of politics to the matter, perhaps more politics than medicine. For this, we must blame the public, not the doctors, whose hands are tied. My pain clinic absolutely refuses to prescribe any narcotics at all to anyone. That keeps them out of trouble and the patients scrambling to find a doc somewhere who won't show up on the radar screen of the spooks who like to arrest doctors and revoke licenses.

    You don't really say whether your husband has lemniscal pain or spinothalamic pain, but I would educate myself on the differences so you can plan intelligently.

  8. #8
    dejerene,so just exactly what IS lemniscal pain?i KNOW what spinothalamic is cuz thats part of my problem and the trigger for my central just like alot of folks here.i also have that lovely sympathetic triggered pain(the RSD) so i know a couple of good triggers and have researched the hell outta them just as you order to ubnderstand my pain(and suprisingly,in order to fill in the clueless Drs,alot of them out there)but this alone has helped me to identify the best types of meds for my pain.i have heard of the lemniscal pain but don't really know exactly what its all about,could you fill me in?i am sure i am not the only one wondering about that.thanks

    1femur,i read thru the highlights on that site you gave but got the impression that it only governs docs in the state of california?i do know they(within the past couple of years or so) passed some sort of a new patients rights bill having to do with docs HAVING to address a patient who comes to them complaining of pain,in that it has to be 'appropriately' this the same thing/i guess i am just a bit confused thats all.nothing new there,lol.thanks

    I think David has the right idea here.i do believe he was referring to roxidodone which comes in different is NOT the oxycontin,even oxycontin,but given in the RIGHT strengths and dosing schedule would really make a big difference.

    when you said that the long acting version of oxycodone "does nothing' what exactly did you mean by that?i am just wondering since the percocet and oxycontin are the very same base med,i would think that if your hubby was at the right dose,it would help.its just a matter of getting to that right dose and having a doc who is willing to titrate up and adjust the meds til that actual dose is took me over two months of adjustments and doc visits to my PM before we finally hit on something that actually brought my screaming 10 down to a much more tolerable 7,this turned out to be 60-60-60,along with two oxy IRs per day allowed for break thru pain.once all of my other meds were adjusted as well,I had much better coverage than I ever came even close to before i started with my current PM doc.

    how much actual time was spent adjusting your hubbys OC before he decided it just didn't work?if there was not alot of adjusting going on along with this being done over a good length of time,i am willing to bet,the doc got too impatient maybe or your hubby and someone just gave up on a really great med just because it wasn't being Rxed and adjusted to your hubbys just takes time,thats all.I just hate to see someone give up on a good possible med before really trying it the way it should be.we only have so many 'tools' in the old arsenol ya know?

    if your hubby has been on the percs now for a while,i wouldn't just rely on bloodwork alone to really see how the liver is doing.honestly,the destruction going on in any organ will only show up in the bloodwork once the actual damage hits some specific "magic" kidneys and liver both have some pretty major polycystic glob formations both inside and outside the organs with my kidneys really becomming a major issue(they are both around approx 19 CMs right now),but amazingly,all of my bloodwork is totally within all the normal ranges.this,despite very clear damage and destruction going on in them of totally healthy organ ultrasounds are just in no way like my numbers will eventually change but only when the destruction hits the right amount to tip the scales.

    like i stated before,if your hubby has been taking that much tylenol per day over an extended period of time,i would very highly reccomend at least an ultrasound be done on his liver and order to really get the best overall picture of whats going on in there,you realistically need both bloodwork and an US or CT to really check them thoroughly.better safe than sorry ya know?

    it would just be soo much better if he could get off all that tylenol completely really.even at the reccomended dosages,over time(chronic usage) the tylenol will have a cummulative affect on the liver.the reccomended dose amount from the manufacturer of tylenol gives 4000 mgs as the max limit,but because of the cummulative affects of tylenol on the liver,when taken on a chronic basis,that number actually goes down to only 3000 per day.

    there is an enzyme in the liver that handles all the "bad stuff" that goes thru it called gluthithione(there is another very long chemical name for this as well)but basically what happens is the liver makes the gluthithione in specific amounts.other "crappy stuff" would include anything else that gets metabolized in the liver as well,like alcohol or other meds.what happens,is when that max amount of the enzyme gets used up,thats when the liver will start recieving damage to the liver cells.and over time this will take its toll.(the process is much more in depth but this is basically how the liver works on tylenol)this is why there is that max limit on coincides with what the average persons enzyme amount normally is.its just a bit risky to keep doing this to your liver every single day and why it is best if you don't actually have to take the high amounts that your hubby is having to every single day.even switching to the roxicodone would be a huge step in alleviating the tylenol issue.why take that crap if you really don't have me marianne,my son went thru a liver transplant seven years ago and you do not want to go that route.

    if his docs seem hesitant to try the roxi or your hubby refuses to try the oxycontin again but with the right titration process this time,just look up tylenol and the effects on the liver,and print off the highlights,present it to the doc and tell him that this is what you are afraid of happening to your hubby.I really do think personally that he should really try the OC again.done in the right way it can be extremely effective.I just really hate to see someone give up on what could have been a very good and effective med for their pain only because it wasn't titrated properly and to the right dose for their he taking any other meds for his pain?this IS neuro pain we are talking about here or other types of pain?i do wish you both luck here.Marcia

  9. #9

    Just time for a brief reply, since a full one is several volumes at least.

    Pain can come from any pain system in the body that is still alive but damaged, ie neuropathic.

    Science is still trying to sort out the systems. They have tried anatomically and are now trying to do it chemically. For example, the nerves that travel with blood vessels, one of the main candidates for how pain bypasses cord, used to be considered autonomic, ie ruled by muscarinic or nicotinic receptors (you can google these terms and read). However, there are a number now who think at least some of the vascular nerves are really somatic afferents. The body responds with "unconscoius" pain and even inflammation when something is wrong in the vessels. Not all unconscious pain may be autonomic, ie governed by the chemicals we associate with autonomic.

    The pains of central pain have been divided into three categories.

    1) spinothalamic. There are TWO ST tracts, ventral and lateral, and you cannot get consensus on which pain goes in which. Thermal and light touch are the two biggies. I have never met a person with CP who has pain from deep pressure. So it is the superficial sensibilities which are affected in ST pain. Univ of Oklahoma believes burniing pain is shunted off into the spinoreticular tract, but burning dysesthesia nevertheless still goes under the title, spinothalamic pain (ST pain).

    2)lemniscal (pain carried in the posterior columns of the cord), called lemniscal because the posteior columns connect up high with the medial lemniscus, which includes lightning pains, muscle pains, etc. These respond to opiates for the most part.

    3) Visceral pains. Here is where we don't know whether it is autonomics or somatic afferents which carry the pain. I have this in my bladder. Burns terribly when full. It is like the little bird in the water glass which suddenly tips over. When just the right point is reached, I cannot stand it and must empty my bladder, NOW. You have seen Alan's post on his visceral pain in his gut, made worse by movement.

    ST pain is really hard or impossible to treat. Sedatives like klonopin are used. Anticonvulsants like neurontin are also used, but I find a large dose of klonopin to do more for me and the newer drugs like Lyrica and Cymbalta which work on GABA are REALLY expensive. They do not make my ST pain feel better than Klonopin so I stick with that. There is a cost. Klonopin is essentially like Rohypnol, the date rape drug, so you can plan on missing out on a lot of life, if you really try to hit the pain with klonopin.

    Those whose posterior column pain (common in the past in neurosyphilis so it is also known as "lightning pain") or the muscle pains carried in that part of the cord usually are helped by opiates. Opiates may also help sedate you and do something for the ST pain, but you are not relieving pain in that setting as much as simply sedating. Given opiate addiction, opioids may not be the way to go if you have ONLY anterior cord (ST) pain. Posterior column (lemniscal pain) is knife life, cramping, etc. It is bad, but it is NOT the horrid burning which saturates the ST tracts and is just beyond description when it is really evoked, as by light touch, or a cold draft. My most intense pain by far is the lightning pains, but the one that causes the most suffering is the ST pain. ST is everywhere and all the time. Posterior column is intermittent.

    I recommended viewing pain in specific detail, not just saying it is "BAD" pain, or "SCI pain" or "neuropain" because it will matter when treatment is rendered. It is foolishness to use a drug which acts on the posterior columns to treat ST pain. If you have prolonged latency on your somatosensory evoked potentials chances are you have at least some component of posterior column pain. If your skin burns like fire when occlusive touch is maintained or if cold air burns it, chances are you have ST pain, which if the Univ of Okla is correct, is also spinoreticular pain.

    Baseline or spontaneous pain is maintained from within the thalamus, but the evocation or worsening of pain requires some sort of input from the periphery. The debate is where that input comes up to the brain from and some think it is the nerves which travel with blood vessels.

    We THINK RSD is autonomic, sympathetic branch, and that is why so many stellate ganglion blocks were done for it. RSD is peripheral not central. Central autonomic pain is called "sympathetically maintained pain"--the test for which is an IV infusion of some sympathetic blocker. you can see how the terms get mixed up and confusing. Even neurologists are sloppy about how they use them so how is a patient supposed to be accurate. Reflex sympathetic dystrophy probably is but may not be sympathetic at all--the uncertainly is why they changed the name to complex regional pain syndrome. Peripheral nerve injury pain is evoked instantaneously by touch etc, while central ST pain has a twenty second or so latency before evocation, known as Mitchell's Delay. This is still the best clinical way to differentiate whether your pain is PNI or of central origin. Lay a piece of saran wrap on RSD and it will hurt instantly. It will take a few seconds or minutes to evoke if the pain is of central origin, at least according to Weir Mitchell.

    Posterior column pain can also be evocable, but there is no known delay. For me it is getting in a cold shower, for others, a transfer from chair to bed. Lightning pain does what it wants to do and is much more wild and ungoverned.
    Last edited by dejerine; 08-13-2006 at 03:27 PM.

  10. #10
    Senior Member
    Join Date
    May 2006
    Somewhere in the Rocky Mountains

    I think you are getting some really good advice here. The Tylenol levels is what would really concern me with your hubbys situation.

    Thank you so much for that detailed explanation. Not a day goes by that I don't learn something from someone here. I take Cymbalta in combination with an Ultram ER everyday. That seems to work wonders for me, even when I walk alot with my braces and get referred pain in my hips.

    I know this is not my thread but I appreciate the willingness to help others with their pain problems.
    T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

    My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

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