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Dr. appt. Tuesday?-Mike?

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Posted Yesterday 11:17 PM (GMT 0)
if i have read through correctly i am under impression you have either a Monday or Tuesday follow-up appt.. is this right? NICK
Posted Today 6:44 AM (GMT 0)
Nick,

Yes, appt. is Tuesday @ 1pm MST. The person I see is what is called a "Board Certified Pain Mgmt. Clinical Nurse Specialist".  On the other thread "To Mike" I gave you the amount of methadone I was on. I had gone up to 50mg and after 6 yrs on that dose flatlined with respiratory failure (miracle I'm still alive). Immediately cold turkey w/d to 30mg and I mean withdrawal, went through shakes, jerks, kicks for about 4 days. Was on 30 until about 1yr ago when I tapered down to 20. I tried to go down further but w/d & other side effects too hard for me w/o help. I also took Lyrica (50mg 2x daily). I really need to get off Percocet, its hard on my gut and not very good at pain relief either. I started having insomnia (not as severe as now at 20mg and told my wife I felt the drug wanted more of itself (giving it a personality, felt like one!) but didn't want anymore. I had personal pain clinic at VA Hospital where I was told they felt the Methadone was no longer effective and suggested a long-term taper and then start tramadol or some other non-narcotic. Since I've been off the Methadone my actual pain is a lot worse than I thought. Originally was hopeful to get off methadone and get on non-narcotic pain control and maybe some vicodin for occasional b/t pain. I don't believe that is possible at this point with my pain level being about 6-7. Best pain level I ever had occasionally was 3 but last year or two has been between 4 & 5. I feel I'm really coming off 30mg dose since I don't ever think I stabilized at 20 (wherewith all the side effects). Others have suggested opana ir to supplement b/t pain in place of Percocet and variation on what dose of the er I should be on (I've heard 40, 20 2x daily and also 10 3x daily). I need to have a game plan when I go in for appt. Could you give me some help on this? Suggestions? You know about rx meds a lot, esp. what b/t pain med you think may work. "God...will not forget your work and the love you have shown Him as you have helped...people" (Heb 6:10). Just wanted to encourage you with that. I resent email to your edited email addresss. Thank you for the time you've been taking to help walk me through this process and helping me to be more informed about my medical decisions and care. Appreciate your kindness and compassion brother. -Mike

Post Edited (blessmymess) : 12/2/2013 1:48:24 AM (GMT-7)

Posted 12/3/2013 1:14 AM (GMT 0)
sounds like a the nurse that out ranks Physician's Asst.s. great, if you are at the V.A. i can understand the poor continuity of care. also, pain is your enemy, turn your back and it will kill you. the Opana ER is a great med if they will reasonably titrate till some level of control maintained. Opana IR is also good but maybe not for you yet because it will not tackle breakthrough or activity related pain as fast and with basically all in 1.5hrs-2hrs. they is a constant with almost all conventional release C2 opioid analgesics: morphine sulfate, hydromorphone, oxycodone, hydrocodone, fentanyl. the one that is slightly more smooth similar to the methadone or many generic "sustained release" morphine sulfate products. now you need still bombardment in my opinion because of how methadone breaks down and your pain is still their with 20mg OpanaER twice a day which is near 80-100 of morphine and you have other sympathetic nervous system over-activity signs. the parasympathetic system needs to be turned on. also many people have a reaction to oxycodone as you put creates a need for itself, thats close, but keep in mind your nervous system has not been level for days-weeks and some of your "feelings" may be there anyway. if i were you i would be brutally honest and tell them what your going through "controlled suffering" not pain managment yet or even good control or many tools to do it with. i would keep a log and make entry anytime you feel anything and have it for next appt. if your pain cause is spinal call it spinal-degeneration if it comes up. i would ask for hydromorphone for breakthrough pain. reason: it is getting over to other side of opioid family tree going the poppy direction, it is a hydrogenated keytone of morphine with potency apprx. 2-7 times morphine and near 1:1 with oxymorphone but it has a faster and more drug in circulating blood at once effect, this would get in your irritated receptors and start to help. i would ask by generic name,"hydromorphone" not brand name "Dilaudid". a good reason is self education due to unrelenting pain. print out THE INTRACTABLE PAIN PATIENTS HANDBOOK FOR SURVIVAL by Forest Tennant MD if you can, shows proactivness for relief not a drug. i would try also to request a mild tranquilizer/analgesic sparring agent like Carisoprodol or Lorazepam or Clonazepam and maybe bump the Lyrica to 75mg 2 times per day. the Lyrica works on a different pathway than the afore mentioned analgesic sparring agents and does not turn the fight flight button off as direct but helps. reason: your last few weeks and if you are not sleeping more than 2hrs at a time tell them, with the other mild tranquilizers you can utilize a non-hypnotic or sedative drug and try amitriptyine or tizanidine "Zanaflex" (has sleep inducing effect) or it's parent drug clonidine. all those offer direct pain filtering also ulike most pure sedatives like ambien or halcion. a secondary tool you could ask for is an anti nausea agent like hydroxyzine or promethazine to take with breaktrough med to potentate the opioid and prevent histamine induced nausea. i am sorry for the last minute but i hope and pray the are compassionate with you and i think the worm will start turning after this step. NICK
Posted 12/3/2013 1:48 AM (GMT 0)
Nick, All of the above mentioned sleep aids, w/d aids, benzos, Benadryl, Phenergan, etc. Have had adverse effect on me, made jitters worse, etc. Feels like side effects of prednisone in a way. They all give me a jumping out of my skin feeling that is worse than the other w/d symptoms. Tried clonazepam, lorazepam, valium, clonidine, etc. and all put me in a bad trip feeling of accelerated jerks, shakes, etc. This gal I'm seeing is not with V.A. but private practice covered by worker's comp. I'm on 10mg Er 2x daily. Again I reiterate, she told me pretty adamantly that if the Er doesn't work I'll need to go back on Methadone. That is why I'm hesitant to ask for anything else. She somehow sees methadone as the cure for what she calls psychological effects from methadone. She was opposed to Fentanyl but okay to "try" the Opana Er. I'm still not clear what a better b/t med may be that doesn't have all the acetaminophen (I don't think she'd go for dilaudid). Frustrating part of this is she has no drug abuse history on me at all, and I've never run out of meds, had hot urinalysis, etc. My appointment is tomorrow. I only have Lyrica in 50mg with refills, so I'll try 50mg 3x daily. Got to get off the percs though, really hard on my system. When I mentioned constipation issues to her, she suggested vicodin. I told her that vicodin was only 1/2 the strength of percs and didn't feel it would help much with the pain I was in. Very frustrating. Any more suggestions with this info? Thanks again Nick. -Mike
Posted 12/3/2013 2:30 AM (GMT 0)
Mike,

Can you treat with someone else, someone new, a fresh set of eyes, at a different facility? She is obviously not managing your pain adequately.

She's trying to tell you there are only two options, with Methadone being the only other one? As if there are only two pain meds in production? As if everyone with CP is on one OR the other, period, end of story?

Can you (without denting her fragile ego), gently tell her you've been reading about some "interesting medications" like (and name a few you'd feel safe trying), and plant the seed, ask her what she knows about them (as opposed to asking for a Rx for them).

I'm so sorry you're going through this because to be frank, something smells very fishy about this type of treatment (or lack there-of). This extends beyond "do no harm." To subject you to false information, to not offer and provide alternative options,...that's dangerous. Flat out dangerous.

You've come too far to back-step because she's got a stick stuck in a dark place. You shouldn't have to suffer. Do you have a lawyer you can confer with and relay the poor/lack of treatment/care?

This is appalling.



M.
Posted 12/3/2013 4:03 AM (GMT 0)
i hope they will reasonably take into account your vitals and the level of suffering for lack of a better word. do you have any epilepsy that is in your family? very few people have that idiosyncratic response from GABA "ligands" which mean it is a thing that has a fit or plug in receptical there to turn on or off that neurobiochemical pharmacological potential. most of those meds you have tried are similar other than clonidine and tizanidine. i have read clinical trials about the people who go trough what you describe being liver enzyme CYP2D6 either to little or to much i forget but the outcome is the same that these people tend to respond better to synthetic type opioid analgesics and that explains the time on methadone because that , meperidine or "Demerol", fentanyl, levorphanol or "Levo-Dromoran", (hard to find but the VA may be able to compound it for you even with an outside perscriber), the line "if this dose not work the only thing we can do is go back to methadone" is stupid. you have more options although price is becoming a barrier. the perscribing information for Opana ER gives avg. example of titration. they make a 40mg but maybe 30 twice a day would work, it is potent but realize the methadone is still maybe in your system a almost 100% the withdrawing over 3-6months will be a thing to hinder you gaining what you normally feelike and pain control but you have made a big dent. last little thing you can do is take loperimide or Immodium AD with breakthrough dose because it is a narcotic. it is not a good permanent thing but it is in the synthetic opioid end which you may do better with and boost pain relief and calm the nervous system. it is for sale over the counter because it does not pass into the brain well but it does a bit and covers body neuroreceptors. Good Luck NICK
Posted 12/3/2013 9:05 AM (GMT 0)
Merrida: It's hard to find people who will take new pain mgmt. patients and there is a process in changing providers I don't want to go through right now until I'm stable on meds and hoping for some compassion tomorrow. Transitioning me off methadone with Percocet was insane! Have no idea why that route was chosen by her. Absolutely horrible pain relief, constipation/bloating, nausea, etc. I do have legal access if need be but not at that point yet. Thanks for advice, comments, concern. Your input is appreciated. -Mike

Nick: My liver enzymes were red flagged in blood work done about a year ago, in a "need to watch this, not that bad yet" state. I was not on 50mg but 20-30 daily. Also, I'm not going through V.A. for pain mgmt., I had tests, consultation done through them for more of a second opinion. Most of my pain issues are still covered by Worker's Comp. They are also covering the Opana ER. Immodium would not be good at this point because I am really having to work on the constipation/bloating that Percocet gives me. I'm putting together a bullet point list of things to cover at my appt tomorrow. I think she has an incomplete history of my condition so will inform best I can. I will not be going back on methadone no matter what happens. Hoping for increase of opana er and some opana ir for b/t. I can wean off the percs while the opana ir kicks into my system. That's my basic plan right now along with massive doses of prayer for this meeting and that I will say only what's necessary and in my best interest while being humble and respectful, but not a pushover. Thanks again both of you. -Mike
Posted 12/3/2013 4:30 PM (GMT 0)
Okay, yes, and I read where you did say that before. I'm sorry I didn't pick it up in the previous posts.

I get you because I'm in the same position, keeping my doc in MA while I'm NH and the process of transferring when I'm far from stable is, as you pointed out, scarier and much more riskier, and complicated.

Did you think about any of those suggestions about nicely mentioning to her you've been researching some alternative methods, and asking her about them (even though she made the methadone statement)....carry on as if you may luck out and this'll get through.

And without asking her "for" any particular medication, bring up 2 or 3 and say you found the reading interesting, and by gosh, what did she think about these interesting options?

(Keep her on her self-imposed pedestal for your own protection).



M.
Posted 12/3/2013 6:12 PM (GMT 0)
I hear you Merrida and take advice/comments to heart. It will be part of my plan today when making appt. I read story of woman in very famous literature that suffered 12 years, had spent all she had on physicians, and instead of getting better she only grew worse. Though I'm a guy I can really relate with her. Will be going in informed, diplomatic, but standing ground in not going back to methadone. Thanks again for caring support. -Mike
Posted 12/3/2013 9:01 PM (GMT 0)
Merrida, or Vickie, that is a very wise idea and very well articulated about keep her on her self-imposed pedestal so you keep yourself out of the line of fire. ha, i like that. i pray we all land into the care of a very compassionate empathetic objective physician. you know the stupid game we have to play for lack of better words to obtain care when we are no different than a diabetic or epileptic patient who needs 24/7 treatment to sustain life. and with the new findings on neuroplasticity and cardac-adrenal/endocrine re-wiring you/we are just as "at risk" or more than patients who have similar problems not driven by unrelenting intractable pain. i am optimistic that Mike was/is being cared for in such a manner that he can move ahead to next step to ultimately gain control and have pain free hours or days. NICK
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