amberley
01-05-2006, 01:40 AM
Dave
I was agin back in the emergency room on 18th Decmber they gave me bolus
of ketamine but it only worked some. They were going to admit me but
I couldnt face it, I said I am ok I am going home. They were
frustrated as there is no plan in my file and it was a saturday and the pain
team doesnt work. I have asked repeatedlyfor a letter stating I am urgent
and this is what you should do butit still isnt done
My pain doc took me off oxycodone so I take ketamine all day . It
has just occured to me I have no breakthrough meds....so when it
gets bad thats the only place for me to go and it gets old they know
my face and you start to feel like bad etc ... the whole
thing frustrates me....
I cant seem to keep out and I cant handle being in there. The whole
battle I have been in maybe 10 times and have spent close to 10
weeks and more in there since September. It feels like prison as I am tied
to a painpump.....most people are like on one of those for a few days.. I
wonder round for weeks......I seem to be the only one on one for
that length of time. All the orderlies know me and the nurses.
I am so terrified of the pain ... I havent been sleeping well, or
eating etc. Its all become very depressing .
I have my moments when I have to admit I want to give up ... I have
no breakthrough meds now only the ketamine so again I was back in
Emergency last night.
I dont know how to solve this and find it all so depressing. I have asked
for a letter that I carry with me or to flag my file. The pain psych said
its hard as they are not sure what to write in the letter. It doesnt differ
much as from my experience they try Iv ketamine if that doesnt work they put
me on a pca pump infusion with midazolam and ketamine. My doc thinks that
with the gut problems I have that morphine is no good, but I have nothing
not even oxycodone for breakthrough pain relief.
Again on 20 th Decmber until 30 Decmber I wa sback in on a pca pump subcut of ketamine 600 mg an dmidazolam 5 mg I was going through 60 ml pumps 2 a day or more. They set it so I could only push it every 20 minutes
my pain fluctuated and went between 4 to 9
when on the 30th I had had enough eg no plan I sai I was goign home th epain psychiatrist called a meeting with a medical doctor I hate , and my pain doc she said I have chronic pain syndorm and I need to accept that and not look for a cure or surgery i said I didnt. they have now put aplan in the Er that states that if i come in that i am to get th ePCA like before subcut.
Dave they mad eme feel like its now all in my head and that I have to accept this an dtry behaviour therapy and shrink counselling. due to all this I am depressed, I feel numb and tranquilised from all these drugs I still feel the pain I am so upset and now I feel powerless I am not sure what to do . The shrink di dall teh talking and sai dthat if my pain got worse on th epump then they would choose to do nothing to relieve my pain. I was overwhelmed by this 3 on me and I went after and told her so. She sai dI need to accept chronic pain syndrome. What is that Dave .......? is that saying its all in my head???? The drugs I am currently on are
Ketamine –50mg liquid solution orally 6 times a day
Venlafaxine150mg once a day,
Haloperidol 2mg once a day at night,
Gabapentin 2,100 mg daily,
Clonazepam .5mg x 2 at night and half to one in morning on each third day and reduce nigh-time dose by half a tablet until back to half a tablet,
Nortryptiline 25 mg once at night,
Clonidine 25 mcg one tablet twice daily,
Phenergan 2 at night if 10 mg,
Ondansetron 8mg take half a tablet up to 3 times daily for sever nausea,
Mylanta as required 20 ml 4 times a day,
Panadol 8 a day 500 mg,
Brufen 400 mg x 4 times a day,
Gaviscon 20 mg x 4 times a day,
Buccastem ,3mg twice daily,
Motilium 10 mg x 4 times daily,
Oemperazole .20 mg twice a day,
Dave you wrote
, Ketamine isn't an actual pain med but it blocks the NMDA recpetor, which is a crucial part in pain perception. Blocking this receptor increaseses tolerance to pain and decreases tolerance to opiates , so in a round about way it offers pain relief. But your question is very valid. It's such a potent disassociative that you simply don't respond to the pain or manay other forms of stimuli.
This is the way I feel numb but pain are you saying it doesnt actually work on pain but just makes you distanced dissociative ????
Dave yu said
I'm just coruious what stopped the titration process. You were using oxyContin or gerneric versions and you stopped because it didn't work? The thing with titration is, not working isn't a great reson to stop, when side effects become a problem then you stop. If you got to 40 mgs of oxy twice a day and gave up , who knows if you needed 100 mgs 3 times a day.
they decided from one blind trial that i wasnt responsive to fentanyl so they stopped it . I also never had a trial I have repeatedly asked for a spinal cord stimulator or pump but they wont do that until the shrink, behaviour stuff and others is done, They will only put me on ketamine. I know oxy works better and I have some morphine do I just say stuff them and use it anyway. My other option I am exploring is comign off all these pain meds on Tuesday and then they will see me on Friday with no pain relief and I won be tranquilised by haliperidol and the clonazepam and ketamine.....
You are also right I just feel sedate dno personality no drive I still cant eat and its no way to live what do I do do I demand to go back on oxycontin to thr shrink or pain doc? They decided they wouldnt give me oxy I didnt choose not too.
Dave you said
How is what they are doing with ketamine and halperidol any better than the shape opiates can leave you in. You can't develp tardative dyskinsea from opiates or have a psychotic break from opiates. Both are risks of the psych meds and anesthesia.
This is nt any better its worse I have been complaining I dont know what a psychotic break is but I have looked up the ticks they say because I am in such a low dose it wont happen is that true
Dave you said
Fortunately my docs understand that there is no such thing as the dose that works for everyone. How high did you go on the LA morphine and the LA oxy and how much IR morpine or oxy have you used. You do become acomadated to the side effects of opiates up untill you hit your own ceiling. You won't get accomadtated to ketamine, you will just need more eventually and the side effects "nausea and disassociation" will increase, The disassociative feeling is part of how the drug works
I went as high as 300 mg morphine a day years ago with 200 mg of sevreol in hospital I was on the ketamine pump with 240 mg oxycodone for break through. I still dont understand what dissociation means .... doe sit mean cut off from thsi world? can you explain? I have no engery and I had mor eon morphine and oxycontin I could function.
Dave you said
I wouldn't take Halperidol as it has no effect on the pain sensory system, It's an antipsychotic that simply knocks you so far out in La la land you don't care or can't complain coherently.It's used as chemical restraint on seniors and violent patients. The term that comes to mind is "the Halidol shuffle", if you have ever seen a psych ward, Expressionless people shuffling around untill they get stuck in a corner and can't find reverse. Ketamines effects really aren't much different and cause terrible nausea.
I am like this I cant complain or fight and I am aimless not motivated to do anything what is teh halidol shuffle do I ssound like I am being affected by this??? this way
Dave you said
I just think there is so much more they could have tried with both oral LA opiates and the pump that you have really been short changed and put on terribly potent psychotrophic meds with rediclous side effects when you still have room to work with LA pain meds..
Take care hun and think about the doses you have tried and why they didn't continue going up unless it was a side effect problem. But compared to Ketamine, how bad could the side effects have been?
they decided to do this themsleves I never though to ask why ......... I am so withdrawn as a result of all these drugs. I didnt have side effects except constipation
I am really despairing here as you can see and appreciate your input as always
debs
I was agin back in the emergency room on 18th Decmber they gave me bolus
of ketamine but it only worked some. They were going to admit me but
I couldnt face it, I said I am ok I am going home. They were
frustrated as there is no plan in my file and it was a saturday and the pain
team doesnt work. I have asked repeatedlyfor a letter stating I am urgent
and this is what you should do butit still isnt done
My pain doc took me off oxycodone so I take ketamine all day . It
has just occured to me I have no breakthrough meds....so when it
gets bad thats the only place for me to go and it gets old they know
my face and you start to feel like bad etc ... the whole
thing frustrates me....
I cant seem to keep out and I cant handle being in there. The whole
battle I have been in maybe 10 times and have spent close to 10
weeks and more in there since September. It feels like prison as I am tied
to a painpump.....most people are like on one of those for a few days.. I
wonder round for weeks......I seem to be the only one on one for
that length of time. All the orderlies know me and the nurses.
I am so terrified of the pain ... I havent been sleeping well, or
eating etc. Its all become very depressing .
I have my moments when I have to admit I want to give up ... I have
no breakthrough meds now only the ketamine so again I was back in
Emergency last night.
I dont know how to solve this and find it all so depressing. I have asked
for a letter that I carry with me or to flag my file. The pain psych said
its hard as they are not sure what to write in the letter. It doesnt differ
much as from my experience they try Iv ketamine if that doesnt work they put
me on a pca pump infusion with midazolam and ketamine. My doc thinks that
with the gut problems I have that morphine is no good, but I have nothing
not even oxycodone for breakthrough pain relief.
Again on 20 th Decmber until 30 Decmber I wa sback in on a pca pump subcut of ketamine 600 mg an dmidazolam 5 mg I was going through 60 ml pumps 2 a day or more. They set it so I could only push it every 20 minutes
my pain fluctuated and went between 4 to 9
when on the 30th I had had enough eg no plan I sai I was goign home th epain psychiatrist called a meeting with a medical doctor I hate , and my pain doc she said I have chronic pain syndorm and I need to accept that and not look for a cure or surgery i said I didnt. they have now put aplan in the Er that states that if i come in that i am to get th ePCA like before subcut.
Dave they mad eme feel like its now all in my head and that I have to accept this an dtry behaviour therapy and shrink counselling. due to all this I am depressed, I feel numb and tranquilised from all these drugs I still feel the pain I am so upset and now I feel powerless I am not sure what to do . The shrink di dall teh talking and sai dthat if my pain got worse on th epump then they would choose to do nothing to relieve my pain. I was overwhelmed by this 3 on me and I went after and told her so. She sai dI need to accept chronic pain syndrome. What is that Dave .......? is that saying its all in my head???? The drugs I am currently on are
Ketamine –50mg liquid solution orally 6 times a day
Venlafaxine150mg once a day,
Haloperidol 2mg once a day at night,
Gabapentin 2,100 mg daily,
Clonazepam .5mg x 2 at night and half to one in morning on each third day and reduce nigh-time dose by half a tablet until back to half a tablet,
Nortryptiline 25 mg once at night,
Clonidine 25 mcg one tablet twice daily,
Phenergan 2 at night if 10 mg,
Ondansetron 8mg take half a tablet up to 3 times daily for sever nausea,
Mylanta as required 20 ml 4 times a day,
Panadol 8 a day 500 mg,
Brufen 400 mg x 4 times a day,
Gaviscon 20 mg x 4 times a day,
Buccastem ,3mg twice daily,
Motilium 10 mg x 4 times daily,
Oemperazole .20 mg twice a day,
Dave you wrote
, Ketamine isn't an actual pain med but it blocks the NMDA recpetor, which is a crucial part in pain perception. Blocking this receptor increaseses tolerance to pain and decreases tolerance to opiates , so in a round about way it offers pain relief. But your question is very valid. It's such a potent disassociative that you simply don't respond to the pain or manay other forms of stimuli.
This is the way I feel numb but pain are you saying it doesnt actually work on pain but just makes you distanced dissociative ????
Dave yu said
I'm just coruious what stopped the titration process. You were using oxyContin or gerneric versions and you stopped because it didn't work? The thing with titration is, not working isn't a great reson to stop, when side effects become a problem then you stop. If you got to 40 mgs of oxy twice a day and gave up , who knows if you needed 100 mgs 3 times a day.
they decided from one blind trial that i wasnt responsive to fentanyl so they stopped it . I also never had a trial I have repeatedly asked for a spinal cord stimulator or pump but they wont do that until the shrink, behaviour stuff and others is done, They will only put me on ketamine. I know oxy works better and I have some morphine do I just say stuff them and use it anyway. My other option I am exploring is comign off all these pain meds on Tuesday and then they will see me on Friday with no pain relief and I won be tranquilised by haliperidol and the clonazepam and ketamine.....
You are also right I just feel sedate dno personality no drive I still cant eat and its no way to live what do I do do I demand to go back on oxycontin to thr shrink or pain doc? They decided they wouldnt give me oxy I didnt choose not too.
Dave you said
How is what they are doing with ketamine and halperidol any better than the shape opiates can leave you in. You can't develp tardative dyskinsea from opiates or have a psychotic break from opiates. Both are risks of the psych meds and anesthesia.
This is nt any better its worse I have been complaining I dont know what a psychotic break is but I have looked up the ticks they say because I am in such a low dose it wont happen is that true
Dave you said
Fortunately my docs understand that there is no such thing as the dose that works for everyone. How high did you go on the LA morphine and the LA oxy and how much IR morpine or oxy have you used. You do become acomadated to the side effects of opiates up untill you hit your own ceiling. You won't get accomadtated to ketamine, you will just need more eventually and the side effects "nausea and disassociation" will increase, The disassociative feeling is part of how the drug works
I went as high as 300 mg morphine a day years ago with 200 mg of sevreol in hospital I was on the ketamine pump with 240 mg oxycodone for break through. I still dont understand what dissociation means .... doe sit mean cut off from thsi world? can you explain? I have no engery and I had mor eon morphine and oxycontin I could function.
Dave you said
I wouldn't take Halperidol as it has no effect on the pain sensory system, It's an antipsychotic that simply knocks you so far out in La la land you don't care or can't complain coherently.It's used as chemical restraint on seniors and violent patients. The term that comes to mind is "the Halidol shuffle", if you have ever seen a psych ward, Expressionless people shuffling around untill they get stuck in a corner and can't find reverse. Ketamines effects really aren't much different and cause terrible nausea.
I am like this I cant complain or fight and I am aimless not motivated to do anything what is teh halidol shuffle do I ssound like I am being affected by this??? this way
Dave you said
I just think there is so much more they could have tried with both oral LA opiates and the pump that you have really been short changed and put on terribly potent psychotrophic meds with rediclous side effects when you still have room to work with LA pain meds..
Take care hun and think about the doses you have tried and why they didn't continue going up unless it was a side effect problem. But compared to Ketamine, how bad could the side effects have been?
they decided to do this themsleves I never though to ask why ......... I am so withdrawn as a result of all these drugs. I didnt have side effects except constipation
I am really despairing here as you can see and appreciate your input as always
debs
Sponsor
ltedeschi
01-05-2006, 09:22 AM
What kind of pain are you having? What is your diagnosis?
I don;t see much in the way of pain meds
I don;t see much in the way of pain meds
Shoreline
01-05-2006, 10:29 AM
Hey Debs, Sorry to hear it's getting you down. I can only imagine with all the meds that efect mood and your thought process. I'm not even sure if you would be bound by any legal document while under the influence of ketamine. You pretty mcuch nailed disaciative on the head. When you consciousness seperates from your body, you don't rember, you can' fighght back, you have little to no personality or emotional reposnses aside from the underlying depression. Ketamine could be used as a date rape drug just like fuffies or GHB or any other med that makes you complacent and causes amnesia.
AS far as accepting yu have chronic pain, that doesn't mean it's all in your head. It just means you have toaccept ou have tolive with some degree of pain. Total relief or a cure is likely beyond their ability without laeaving you comletely sedated. This s the advantage of opoiates. You become used to the sedative properties and can function while taking them, they don't cause the side effects that ketamine and Halperidol do.
AS fas doses, THere really is no ceiling n orphine, oxycodone, fentanyl ror emthadone. Demerol does have a ceiling due to it's possible seizures from prolonged use but as far as doses go. I have swithced back and forth between oxy to meth to morhne to meth and back to morphine. Oxy never relay worked well as a base med but meth and morphine did. The first time they switced me from meth to morph, they started at 200 mgs, that didn't owrk, so 300, same problem and we went to 400. At this apt I was seeing a nurse practioneer and she was giving me the igh dose speech and how these meds are addicting, yada yada, I asked to see my dooc and he completely agreed when I said at this point it really doesn't matter if I'm taking 400 mngs 600 mgs or 1600 mgs of morphine per day. I'm physically dependent and still bed ridden. SO the increased to 600 mgs a day and I finally got relief. I was able to sta n the same dose for almost a year before insurance changed and I had to go back to the ld dose of methadone, 120 mgs a day. I also have and still do use BT meds for when long acting meds aren't working and the pump isn't keeping things under cnntrol. I use anywhere from 15mgs oto 60 mgs of oxyIR to bring the pain level back down to the 5-6 range.
I haven't seen the low side of a 5 in almost 6 years. Haven't slept more than 3 hoursstaraight in 6 years. Yes I have to accept that I will have sme egree of pain to deal with for the rest f my life, It deoesn't mean it's all in m head, It's just m y new reality. Psych stuff to help except tyour new reality sis normal, but to accept it when tey aren't doing everything they can to manage your pain doesn't have to be exceptable.
Are they afarid of you laying around , unpreductive and wasted on meds? Isn't hat what the ketamine and Halperiodol do. The advantage of opiates is there is no ceiling, there is no internal organ damage. You become used to the cognative side effects like drosiness and you can function better on opiates than you could ever hope to on the pscych meds. It just doesn't make sense other than they would rather put you in La la land than treat your pain.
Whetever the msyterious sweede did during his blind trials needs to be tssed ot the window and anythigng and evrything he attempted med wise should be retried. If yu didn't repond to fenatnyl, how does that rule out all other opiates, how does he know he gave you a dose strong enough to manage your pain. What iis he using for a dosing guide, is previous experience. It just makes sense that every doc will ave one patient that neds more than others. Someone will be a docs highest dose patient and I wouldn't care if it was me or the guy after me. Focus on restoring function and qauality of life when speaking t them about pain. Askng to be able to sit through a movie or dinner desn't seem like too much to ask even after you have convincd the shrinks you understand and except that a 5-6 may be the best pain cntrol yu get. But they reall aren't focusing on pain control. Your meds sound more like a psuch patients and can only exlain that by suggesting they arn't comfortable prescribin what you need as far as pain meds but will sedat you to keep you quite. THat's not acceptable and there are other docs in your country. Contact medtronics and they will give you the nnames of PM docs certified to implant and manage their devices. Get away from these nut jobs that want t treat you like a nut job. It's just fear and ignorance anbd should anything go wrong they can blame it on a psych condition that the have created but made worse by poor drug selection.
The halido shuffle just eans your so far out in left field that you actualy shuffle around the room untill you get stuck in a corner like a cheap toy robot. These meds prettymuch disconect your brain from your body and make you compliant. PLease please get outside that lop of docs. Travel to another city, relocate, stay with friends or family, but a couple docs saying learn to live with it, becaus I'm not comfortable prescribing morphine or oxy or trying fent or methadne is rediculous. They have the meds available. They haven't seen you hit a ceiling with side effects, they just decided that they would rather dope you up like your nuts. &%% of the meds your taking could be discontinued wit the right dose of pain eds ror a pump or SCS. HOw can they justify witholding pain medication and rationalize putting you in a stupor is somehow better than treating your pain. Even on high dose opiates, you don' stay in a stupor, your bodygts used to them and you can function without others knowing your medicated.
I had a heart attack on my 36th Bday, I was taking 600 mgs of morphine "Kadina" a day and usng 1-2 30mg oxyIR per dose. When my flks drove in the next day, I was so coherent they thought they had detoxed me. I said no, this is how the meds always effect me, you would never know I take what I do, I don't get high from these, I simply getenough relief to help me function and live a life as normal as possible given my condition. That one visit pretty much put an end to my parents fear about opiates and how I must be laying around watsed from such a large dose. It just doesn't work that way. I have things I have to do, like care for my child, cook, clean etc. It's not the most fullfilling life now but It's beter than being bed ridden and contributing nothing.
AS far asd dose, He mayhave simply stopped way to soon. When tey implanted the pump. They started at 2 mgs of morphine per day. I was miserable and had adjustements every week the first 2 motnhs, then every 2 weeks and it took 6 months and 16 adjustement to reach 12.5 mgs per day. Their cacluations were 1/12 of what I needed. If they had turned the pump on and I complained of pain, what would they do in NZ, Take out the pump because 2 mgs wasn't wrorking? That' just nuts just like suggesting you didn't repond to how ever many mcg of fent they gave you, you may have needed 10 times the dose to manage your pain but never got a chance to try. I don't think the docs your seeing are ever goning to go that route , that's why I keep nudging you to get away from the docs that you gave more than a fair shot at mabageing your pain and start over with a new doc that has a different phylosophy. Thinking that because you didn't respond to the one or two doses of fent you were given durng a blind trial 8 monhs ago means you not opiate responsive??? is the most absurd crap I have ever heard. I didn't respond to 2 mgs of IT morphine when they turned my pump on. I'm glad they were willing to adjust it after going through the trouble to implant it. :rolleyes:
I you have family that can go with you to your next apt and demand they do something and not leave you in misery at home untill the next time they have to drive you to the ER means their methods and techniques aren't working. Maybe having someone else describe what your daysand nights are like will make a difference. For gods sake, try and find a dose of pain meds that doesn't leave you doped and lowers your level of pain to a point you can live with and tolerate, and still remain as functional as possible.It may be 20 gs f oxy or 100 mgs of oxy 3 tmes a day with BT eds for when your pain spikes. That's the one thing I haven't seen them do yet.
Hang in there, The right doc may be just around the corner. If your present group ofdocs don't believe in opiates, they aren't going to refer you to one that does. So they are not only screwing up your care, but preventing you from going elswhere where somone may have a completely different physlosophy about the use of opiates and the meds they are using now.
Don't stop the meds your on now cold tureky to show them anything, It is dangerous and shouldn't be done. Better to have your family go and have an intervention with your PM doc and pull his head out of his backside.
Take care, Dave
AS far as accepting yu have chronic pain, that doesn't mean it's all in your head. It just means you have toaccept ou have tolive with some degree of pain. Total relief or a cure is likely beyond their ability without laeaving you comletely sedated. This s the advantage of opoiates. You become used to the sedative properties and can function while taking them, they don't cause the side effects that ketamine and Halperidol do.
AS fas doses, THere really is no ceiling n orphine, oxycodone, fentanyl ror emthadone. Demerol does have a ceiling due to it's possible seizures from prolonged use but as far as doses go. I have swithced back and forth between oxy to meth to morhne to meth and back to morphine. Oxy never relay worked well as a base med but meth and morphine did. The first time they switced me from meth to morph, they started at 200 mgs, that didn't owrk, so 300, same problem and we went to 400. At this apt I was seeing a nurse practioneer and she was giving me the igh dose speech and how these meds are addicting, yada yada, I asked to see my dooc and he completely agreed when I said at this point it really doesn't matter if I'm taking 400 mngs 600 mgs or 1600 mgs of morphine per day. I'm physically dependent and still bed ridden. SO the increased to 600 mgs a day and I finally got relief. I was able to sta n the same dose for almost a year before insurance changed and I had to go back to the ld dose of methadone, 120 mgs a day. I also have and still do use BT meds for when long acting meds aren't working and the pump isn't keeping things under cnntrol. I use anywhere from 15mgs oto 60 mgs of oxyIR to bring the pain level back down to the 5-6 range.
I haven't seen the low side of a 5 in almost 6 years. Haven't slept more than 3 hoursstaraight in 6 years. Yes I have to accept that I will have sme egree of pain to deal with for the rest f my life, It deoesn't mean it's all in m head, It's just m y new reality. Psych stuff to help except tyour new reality sis normal, but to accept it when tey aren't doing everything they can to manage your pain doesn't have to be exceptable.
Are they afarid of you laying around , unpreductive and wasted on meds? Isn't hat what the ketamine and Halperiodol do. The advantage of opiates is there is no ceiling, there is no internal organ damage. You become used to the cognative side effects like drosiness and you can function better on opiates than you could ever hope to on the pscych meds. It just doesn't make sense other than they would rather put you in La la land than treat your pain.
Whetever the msyterious sweede did during his blind trials needs to be tssed ot the window and anythigng and evrything he attempted med wise should be retried. If yu didn't repond to fenatnyl, how does that rule out all other opiates, how does he know he gave you a dose strong enough to manage your pain. What iis he using for a dosing guide, is previous experience. It just makes sense that every doc will ave one patient that neds more than others. Someone will be a docs highest dose patient and I wouldn't care if it was me or the guy after me. Focus on restoring function and qauality of life when speaking t them about pain. Askng to be able to sit through a movie or dinner desn't seem like too much to ask even after you have convincd the shrinks you understand and except that a 5-6 may be the best pain cntrol yu get. But they reall aren't focusing on pain control. Your meds sound more like a psuch patients and can only exlain that by suggesting they arn't comfortable prescribin what you need as far as pain meds but will sedat you to keep you quite. THat's not acceptable and there are other docs in your country. Contact medtronics and they will give you the nnames of PM docs certified to implant and manage their devices. Get away from these nut jobs that want t treat you like a nut job. It's just fear and ignorance anbd should anything go wrong they can blame it on a psych condition that the have created but made worse by poor drug selection.
The halido shuffle just eans your so far out in left field that you actualy shuffle around the room untill you get stuck in a corner like a cheap toy robot. These meds prettymuch disconect your brain from your body and make you compliant. PLease please get outside that lop of docs. Travel to another city, relocate, stay with friends or family, but a couple docs saying learn to live with it, becaus I'm not comfortable prescribing morphine or oxy or trying fent or methadne is rediculous. They have the meds available. They haven't seen you hit a ceiling with side effects, they just decided that they would rather dope you up like your nuts. &%% of the meds your taking could be discontinued wit the right dose of pain eds ror a pump or SCS. HOw can they justify witholding pain medication and rationalize putting you in a stupor is somehow better than treating your pain. Even on high dose opiates, you don' stay in a stupor, your bodygts used to them and you can function without others knowing your medicated.
I had a heart attack on my 36th Bday, I was taking 600 mgs of morphine "Kadina" a day and usng 1-2 30mg oxyIR per dose. When my flks drove in the next day, I was so coherent they thought they had detoxed me. I said no, this is how the meds always effect me, you would never know I take what I do, I don't get high from these, I simply getenough relief to help me function and live a life as normal as possible given my condition. That one visit pretty much put an end to my parents fear about opiates and how I must be laying around watsed from such a large dose. It just doesn't work that way. I have things I have to do, like care for my child, cook, clean etc. It's not the most fullfilling life now but It's beter than being bed ridden and contributing nothing.
AS far asd dose, He mayhave simply stopped way to soon. When tey implanted the pump. They started at 2 mgs of morphine per day. I was miserable and had adjustements every week the first 2 motnhs, then every 2 weeks and it took 6 months and 16 adjustement to reach 12.5 mgs per day. Their cacluations were 1/12 of what I needed. If they had turned the pump on and I complained of pain, what would they do in NZ, Take out the pump because 2 mgs wasn't wrorking? That' just nuts just like suggesting you didn't repond to how ever many mcg of fent they gave you, you may have needed 10 times the dose to manage your pain but never got a chance to try. I don't think the docs your seeing are ever goning to go that route , that's why I keep nudging you to get away from the docs that you gave more than a fair shot at mabageing your pain and start over with a new doc that has a different phylosophy. Thinking that because you didn't respond to the one or two doses of fent you were given durng a blind trial 8 monhs ago means you not opiate responsive??? is the most absurd crap I have ever heard. I didn't respond to 2 mgs of IT morphine when they turned my pump on. I'm glad they were willing to adjust it after going through the trouble to implant it. :rolleyes:
I you have family that can go with you to your next apt and demand they do something and not leave you in misery at home untill the next time they have to drive you to the ER means their methods and techniques aren't working. Maybe having someone else describe what your daysand nights are like will make a difference. For gods sake, try and find a dose of pain meds that doesn't leave you doped and lowers your level of pain to a point you can live with and tolerate, and still remain as functional as possible.It may be 20 gs f oxy or 100 mgs of oxy 3 tmes a day with BT eds for when your pain spikes. That's the one thing I haven't seen them do yet.
Hang in there, The right doc may be just around the corner. If your present group ofdocs don't believe in opiates, they aren't going to refer you to one that does. So they are not only screwing up your care, but preventing you from going elswhere where somone may have a completely different physlosophy about the use of opiates and the meds they are using now.
Don't stop the meds your on now cold tureky to show them anything, It is dangerous and shouldn't be done. Better to have your family go and have an intervention with your PM doc and pull his head out of his backside.
Take care, Dave
amberley
01-05-2006, 03:10 PM
Dave on question before I leave soon
why is it dangerous to stop all these meds cold turkey
I figured if I did that then I could think straight an dthey would finally
see
debs
why is it dangerous to stop all these meds cold turkey
I figured if I did that then I could think straight an dthey would finally
see
debs
amberley
01-05-2006, 03:11 PM
Itedeschi
my specialist whi I trust in another city has said pancreatic and biliary problems
these pain docs say wind up chronic pain syndrome
debs
my specialist whi I trust in another city has said pancreatic and biliary problems
these pain docs say wind up chronic pain syndrome
debs
mpvt
01-06-2006, 09:15 AM
Dave is right!!!If your not able to get the proper amount of opiates to kill pain then your quality of life goes down the tubes.I have been on opiates for 25 years and the majority of that time was spent underdosed.I went from doctor to doctor and eventually started to get my own opiates.I don't suggest to anyone doing this as you have no control over the meds your taking.I was taking 3 000 mgs of ms contin a day just 3 years ago.I have since gone on methadone and have found that at 400mg/day my pain is controlled and I can live a productive life.I wish I had found this doctor 20 years ago but what really matters is I'm undercontrol and I have my quality of life back.So don't give up,there are some people like us that need large doses of opiates to live a somewhat normal life and we shouldn't feel guilty about that....Dave :)
Shoreline
01-06-2006, 12:57 PM
Debs, They treat intractable pain with LA opiates in the states, not every doc has that point of veiw, but opiates leave you more functional than ketamine and halperidol.
AS far as stopping them abruptly, I think you would be too much of a mess to even have a rational conversation about your health care, but they need to know what your quality of life is like. Sometimes it takes an outside party and sometimes, no matter what, a doc isn't gong to change his mind and say well I guess in your case opiates would be OK.
The only major reason not to prescribe them is if you already have chronic constipation. Trust me , at 600 mgs of oral morphine plus another 90-120 mgs of oxy as BT, Constipation was a big issue, but it was manageble. I still manage with a pump and that much Oxy, I wouldn't even want to convert my dose of dilauid to an oral dose, folks would freak out and it's a ballpark conversion.You can use 100X or 300X stronger than oral .
I'm able to tolerate more dilaudid than morphine but don't get the same level of relief. It's a catch 22, Pain or side effects I can't tolerate, and constipation wasn't a side effect that couldn't be managed. I still use Yakima paste, prescription and OTC meds along with lots of water and fruit and senna tea. You can change your diet, that's the easy part. Getting away from a doc that thinks letting you vedge on antipsychotics and tranquailizer/anesthetics is some how better than being dependent on opiate is so back asswards I'm beside myself.
I do get it, I went through the same crap for 7 years. Docs that believed their methods could manage anyones pain and everyoone was treated the same. IF you didn't respond to the couple tricks they knew, there was something wrong with you. If your GP doesn't believe in opiates, he's not going to refer you to a doc that uses them. You need to find out who's blocking you and who simply can't help.
Contact medtronics,The folks that make the pump and find out who in NZ is certified to implant and manange pumps and SCS and go and see them. The manufacturer rep may even return your call and given a good explanation he may be able to giude you. I talked to our local rep prior to my implant when doing research. If a doc believes in the use of a pump to manage pain, then likely he believes the benefit of opiaites to restore function, outweighs the negtive miss information tought to docs even up to this day.
Ask an ER resident what he thinks about chronic pain. It's his biggest nightmare before they even become an official doc or surgeon because they can't fix it and suspect everyone of abuse.
That attitude, that most are drug seekers and opiates are the road to addiction even when deperately needed to function , means they don't even know the difference between physical dependence and actual psych addiction. Where your quality of life deminishes due to abuse of medication. I've never seen an addicts quality of life improve by using illegal opiates but I have seen CP patients improve drastically by properly dosed opiate medication.
I honestly wouldn't be surprised if there is another doc much closer than you think. But if your docs don't think opiates are the way to manage your pain, they aren't going to refer you to someone they know uses them. Medtronics is a great back door way to find another doc. Your doc may be listed but is so confused anyway don't worry about him. Find a new doc. Talk to your pharmacist that must think functional on pain eds has got to be better than non functional on that cocktail you're on.
You can and will find someone to help, but you feel trapped in a sytem where your dealing with the lowest quality of care, but without that you would have nothing. Consuting with another group of docs, PM clinic or university doesn't mean your doc shopping or breaking laws to get meds. Your looking for a cure or a way to survive just like you would if you had cancer. If your local docs said you had a year to live and no treatment would help, wouldn't you want a second or third opinion. Perhaps try something they may not believe in. You would probably have to get outside that loop of docs to find someone with an opinion that disagree with the present group of experts :rolleyes:
This is no different. CP is a disabling disease that robs every aspect of your life and spreads if untreated. Don't wast more time with docs that are never going to go against what they believe or were tought, that opiates are bad unless your dieing or use them for short post op treatment.
I'm going to start thinking Ill of NZ and think they treat their sheep better than people if you don't prove me wrong and find a new doc ;) .
The crazy thing is that CP patients are about 8oo times more likely to take their own life than someone in the average population. When this happens to a PM docs patient, it just confirms their belief that the patient was mentally ill and witholding opiates probably prolonged their life. They have to jusify this crap to sleep at night.
My broteher killed himself and no more people are allowed, thats the rule. Whatever seems unbearable today will have a different outlook 6 months, a year or 2 years from now. Your just doing the PM shuffle amongst docs that don't believe in opiates. It takes what it takes and 600 mgs of long actring morphine is no more dangerous than 200 mgs a day. It's just a number. If you never got to reach an effectve dose or try a different opiate, than nobody knows if you won't respond.
The answer is as simple as use what it takes as long as it doesn't impair you more than the condition. Right now the meds you are on break that rule, how is that better???
Please don't think I'm mad at you, you just need to give up on these quacks and find someone else. Like I have always said, take away what works, and if ketamine is something that works in emergencies, than remeber that's an option for rescue medication. There is no way maint use of ketamine could ever be explained in the US. It's not a standard of care other than inducing a coma. Your doc would likely be in jail over the ketamine long before opiates, because he's too afraid to prescribe the apropriate medication and the right dose of opiates. He thinks 24 hour sedation is better than functioning. You know bbetter so gtt agressive, get help, call medtronics, call your pharmacist, ask folks to help you get out of town if you need too. Once you pain is under control, you won't b a burden s don't feel bad now. You would do it for them, right? So why is it too much to ask for help for yourself to make an apt or get out of town or do whatever it takes to find a compassionate and knowledgable doc.
Take care, Dave
AS far as stopping them abruptly, I think you would be too much of a mess to even have a rational conversation about your health care, but they need to know what your quality of life is like. Sometimes it takes an outside party and sometimes, no matter what, a doc isn't gong to change his mind and say well I guess in your case opiates would be OK.
The only major reason not to prescribe them is if you already have chronic constipation. Trust me , at 600 mgs of oral morphine plus another 90-120 mgs of oxy as BT, Constipation was a big issue, but it was manageble. I still manage with a pump and that much Oxy, I wouldn't even want to convert my dose of dilauid to an oral dose, folks would freak out and it's a ballpark conversion.You can use 100X or 300X stronger than oral .
I'm able to tolerate more dilaudid than morphine but don't get the same level of relief. It's a catch 22, Pain or side effects I can't tolerate, and constipation wasn't a side effect that couldn't be managed. I still use Yakima paste, prescription and OTC meds along with lots of water and fruit and senna tea. You can change your diet, that's the easy part. Getting away from a doc that thinks letting you vedge on antipsychotics and tranquailizer/anesthetics is some how better than being dependent on opiate is so back asswards I'm beside myself.
I do get it, I went through the same crap for 7 years. Docs that believed their methods could manage anyones pain and everyoone was treated the same. IF you didn't respond to the couple tricks they knew, there was something wrong with you. If your GP doesn't believe in opiates, he's not going to refer you to a doc that uses them. You need to find out who's blocking you and who simply can't help.
Contact medtronics,The folks that make the pump and find out who in NZ is certified to implant and manange pumps and SCS and go and see them. The manufacturer rep may even return your call and given a good explanation he may be able to giude you. I talked to our local rep prior to my implant when doing research. If a doc believes in the use of a pump to manage pain, then likely he believes the benefit of opiaites to restore function, outweighs the negtive miss information tought to docs even up to this day.
Ask an ER resident what he thinks about chronic pain. It's his biggest nightmare before they even become an official doc or surgeon because they can't fix it and suspect everyone of abuse.
That attitude, that most are drug seekers and opiates are the road to addiction even when deperately needed to function , means they don't even know the difference between physical dependence and actual psych addiction. Where your quality of life deminishes due to abuse of medication. I've never seen an addicts quality of life improve by using illegal opiates but I have seen CP patients improve drastically by properly dosed opiate medication.
I honestly wouldn't be surprised if there is another doc much closer than you think. But if your docs don't think opiates are the way to manage your pain, they aren't going to refer you to someone they know uses them. Medtronics is a great back door way to find another doc. Your doc may be listed but is so confused anyway don't worry about him. Find a new doc. Talk to your pharmacist that must think functional on pain eds has got to be better than non functional on that cocktail you're on.
You can and will find someone to help, but you feel trapped in a sytem where your dealing with the lowest quality of care, but without that you would have nothing. Consuting with another group of docs, PM clinic or university doesn't mean your doc shopping or breaking laws to get meds. Your looking for a cure or a way to survive just like you would if you had cancer. If your local docs said you had a year to live and no treatment would help, wouldn't you want a second or third opinion. Perhaps try something they may not believe in. You would probably have to get outside that loop of docs to find someone with an opinion that disagree with the present group of experts :rolleyes:
This is no different. CP is a disabling disease that robs every aspect of your life and spreads if untreated. Don't wast more time with docs that are never going to go against what they believe or were tought, that opiates are bad unless your dieing or use them for short post op treatment.
I'm going to start thinking Ill of NZ and think they treat their sheep better than people if you don't prove me wrong and find a new doc ;) .
The crazy thing is that CP patients are about 8oo times more likely to take their own life than someone in the average population. When this happens to a PM docs patient, it just confirms their belief that the patient was mentally ill and witholding opiates probably prolonged their life. They have to jusify this crap to sleep at night.
My broteher killed himself and no more people are allowed, thats the rule. Whatever seems unbearable today will have a different outlook 6 months, a year or 2 years from now. Your just doing the PM shuffle amongst docs that don't believe in opiates. It takes what it takes and 600 mgs of long actring morphine is no more dangerous than 200 mgs a day. It's just a number. If you never got to reach an effectve dose or try a different opiate, than nobody knows if you won't respond.
The answer is as simple as use what it takes as long as it doesn't impair you more than the condition. Right now the meds you are on break that rule, how is that better???
Please don't think I'm mad at you, you just need to give up on these quacks and find someone else. Like I have always said, take away what works, and if ketamine is something that works in emergencies, than remeber that's an option for rescue medication. There is no way maint use of ketamine could ever be explained in the US. It's not a standard of care other than inducing a coma. Your doc would likely be in jail over the ketamine long before opiates, because he's too afraid to prescribe the apropriate medication and the right dose of opiates. He thinks 24 hour sedation is better than functioning. You know bbetter so gtt agressive, get help, call medtronics, call your pharmacist, ask folks to help you get out of town if you need too. Once you pain is under control, you won't b a burden s don't feel bad now. You would do it for them, right? So why is it too much to ask for help for yourself to make an apt or get out of town or do whatever it takes to find a compassionate and knowledgable doc.
Take care, Dave
amberley
01-13-2006, 03:53 AM
Dave
Sorry to be awhile in my reply but I was admitted back to hospital on the subcutaneous ketamine on 6th to the 11th.
This was after they tried to committ me as they feared I was going to kill myself due to the pain this was the pain psych who has also recommended ECT for pain treatment. as you can imagine I wa snot happy. I said my pain make sme this way it is not being treated properly.
I see this shrink again on Monday and will be giving her a piece of my mind, they did further psych asessments in hospital whilst I was on the pump.
I have also asked from break through meds as I have nothing , my pain doc said take more ketamine capsules else only option is SC keta,ine in hospital. He is now away for 2 wees and fully expects I wont last that long ot of hospital as he called me tonight and gave th ename of the stand in pain doc.
I have a meeting on wednesday that i am taking my mum too to talk about my treatment, my desire for a SCS etc and the managaement will all be there.
i will also be asking about breakthrough meds.
My pain doc wont prescribe any opiates until 3 months i sup in mid february eg he thinks the receptors will be reset. When i wa staking these the constipation was unmanageable with anything.
I told my pain do cyesterday when i saw him i had stopped the haliperidol he coached me to keep it in reserve and to not stop everything else I will end up back in hospital, I have tried spacing out the ketamine but my pain spirals then I end up having to take the haliperidol. I also said I wated to decrease the clonazepam but he said to do it slowly and it has a counteracting effect against ketamine dreams
I do feel trappe din this system as to travel I am not sure that I would mak ethe trip or last long and then havign to explain at another hsopital what has been happening with my pain.
I am sure that it is the pain doc and pain psych stopping the opiates but they are all in th eloop and I cant get out it leaves me feelign desperate and hopeless and I believe and understand what you say about people being morethen 800 times likely to take their own life.I fear the pain psych will try yet again on her misguided force to make me accept that what i have i sshronic pain syndrome whereas my pain doc knows that my gut is the problem and he has been trialling me on sandostatin an dhas asked me to be referred tp a leading surgeron in gastroenterology and I also have an opinion coming on the bialary tree from mine
thanks for your input Dave I value it
debs
Sorry to be awhile in my reply but I was admitted back to hospital on the subcutaneous ketamine on 6th to the 11th.
This was after they tried to committ me as they feared I was going to kill myself due to the pain this was the pain psych who has also recommended ECT for pain treatment. as you can imagine I wa snot happy. I said my pain make sme this way it is not being treated properly.
I see this shrink again on Monday and will be giving her a piece of my mind, they did further psych asessments in hospital whilst I was on the pump.
I have also asked from break through meds as I have nothing , my pain doc said take more ketamine capsules else only option is SC keta,ine in hospital. He is now away for 2 wees and fully expects I wont last that long ot of hospital as he called me tonight and gave th ename of the stand in pain doc.
I have a meeting on wednesday that i am taking my mum too to talk about my treatment, my desire for a SCS etc and the managaement will all be there.
i will also be asking about breakthrough meds.
My pain doc wont prescribe any opiates until 3 months i sup in mid february eg he thinks the receptors will be reset. When i wa staking these the constipation was unmanageable with anything.
I told my pain do cyesterday when i saw him i had stopped the haliperidol he coached me to keep it in reserve and to not stop everything else I will end up back in hospital, I have tried spacing out the ketamine but my pain spirals then I end up having to take the haliperidol. I also said I wated to decrease the clonazepam but he said to do it slowly and it has a counteracting effect against ketamine dreams
I do feel trappe din this system as to travel I am not sure that I would mak ethe trip or last long and then havign to explain at another hsopital what has been happening with my pain.
I am sure that it is the pain doc and pain psych stopping the opiates but they are all in th eloop and I cant get out it leaves me feelign desperate and hopeless and I believe and understand what you say about people being morethen 800 times likely to take their own life.I fear the pain psych will try yet again on her misguided force to make me accept that what i have i sshronic pain syndrome whereas my pain doc knows that my gut is the problem and he has been trialling me on sandostatin an dhas asked me to be referred tp a leading surgeron in gastroenterology and I also have an opinion coming on the bialary tree from mine
thanks for your input Dave I value it
debs