Declining quality of medical care once you're on methadone?

[patientX]

Hi guys,

This question is mainly for people here who are on a methadone programme and have chronic illness. I've been on methadone since July, and am rather unhappy with the fact that when I commenced my doctor took me off my anti-seizure and seizure support medicine (I suffer tonic clonic seizures every 2-3 days) and won't restart them for no reason other than "you don't need it", however my body is feeling absolutely fucked over from all these seizures... usually after having one in public I'm taken via ambulance to hospital where they administer the same or similiar medicine anyway while I'm unconcious :-S

Reading the booklets provided, theoretically going on a methadone programme shouldn't automatically make me ineligible for necessary health-care. I can understand that my doctor won't prescribe any pain medicine (not that I have asked, as the methadone works fine for controlling my cancer pain), but the seizures are really messing up my life and making it very emotionally draining for my girlfriend (having to tend to me when I'm having a seizure, have me not come back from a shopping trip, only to get a call from the hospital later to be told I had had a seizure on a bus etc.)

I've gone to a GP behind my methadone prescribers back and got a referral to a neuro, as the methadone GP refused to give me one, to get his opinion on the matter.

But really, my GP is being a dick right? I'm afraid to go elsewhere becuase I don't want it to look like I'm doctor-hopping, and the next methadone prescriber is an extra 2 hours travelling time, ontop of the already 1.5 hours I have to travel.

Another thing, I haven't been given takeaways because I failed a drug test due to having a non-abuseable prescription medicine in my system, administered to me while unconcious at the hospital (I have the paperwork that shows this, and a 'clean' test a couple of days earlier). Another thing that grinds my gears...

Thoughts?

 

[Crankinit]

It sounds like you just got an asshole of a doctor. That sucks man, but there's not much that you can do, that kind are usually set in their ways and impossible to argue with, they treat patients like lab rats instead of people in need of help and refuse to accept that anyone who hasn't been to med school could know more about even a particular specialized topic than a doctor could. The more you argue the more they'll dig their feet in, and try to punish and control you - right and wrong, both factual and moral, don't come into it. GP's are the worst for this because a lot of them have a bit of an inferiority complex going on, since they're pretty far down on the rungs of the medical career ladder.

I'm curious, what medication was it that was in your system that made you "fail" the drug test? But if he ignores hospital paperwork to intentionally fail you, then you've got a real piece of work.

And what medication is it that he took you off that was originally preventing the seizures (sounds like clonazepam?).

 

[poledriver]

Have you been able to try cannabis oil/tincture for your seizures (or the cancer) ? I ask because I have read and seen on tv quite recently quite a few people and families who seem to be having some major success reducing their seizures with the oil.

 

[slortaone]

^ how easy is it to come across cannabis tincture for medicinal use??

 

[poledriver]

Im not too sure. There seems to be an underground movement for people to obtain it with care/compassion groups, I dont know how one would get involved, I think one way would be via the hemp embassy in Nimbin (even by FB or phone/email) and they might be able to point a person in the right direction.

I heard on some show a week or two ago a family who were using it came across suppliers via a website that sounded like some forum/community for something but again im not too sure.

 

[EarthBounded]

^ how easy is it to come across cannabis tincture for medicinal use??

Its legal to purchase CBD tincture from hemp in the USA.

 

[patientX]

It sounds like you just got an asshole of a doctor. That sucks man, but there's not much that you can do, that kind are usually set in their ways and impossible to argue with, they treat patients like lab rats instead of people in need of help and refuse to accept that anyone who hasn't been to med school could know more about even a particular specialized topic than a doctor could. The more you argue the more they'll dig their feet in, and try to punish and control you - right and wrong, both factual and moral, don't come into it. GP's are the worst for this because a lot of them have a bit of an inferiority complex going on, since they're pretty far down on the rungs of the medical career ladder.

I'm curious, what medication was it that was in your system that made you "fail" the drug test? But if he ignores hospital paperwork to intentionally fail you, then you've got a real piece of work.

And what medication is it that he took you off that was originally preventing the seizures (sounds like clonazepam?).

Thanks for your response.

The anti-seizure medicine isn't a benzo or anything addictive, just your standard anti-epilepsy medicine "epilum" or however it's spelt. I did used to be given diazepam to help me recover after seizures, but had accepted that I wouldn't get that again once I went onto methadone. I 'failed' the drug test due to being given diazepam at the hospital. He's not ignoring the paperwork as such, just says it's my responsibility to say "no" when they go to administer it, regardless of m level of conciousness. When you bear in mind I wear a necklace with my GF's contact details around my neck because for 1 to 1.5 hours after my larger seizures I can't remember my own details or hers, Idon't think it's fair to hold me accountable for going alongwith the reatment the ER docs give me.

I'm thinking of going to another GP to get a refeeral to neuro, and then getting a 2nd opinion from him for my seizure management? Surely a letter from a neuro would certainly make it almost impossible for my doctor to deny me a non-addictive epilepsy medication? I don't know, maybe it comes back to what you're wisely saying about what's morally right doesn't matter once they dig their heels in...


Poledriver, due to drug testing I would not be able to try it regarding seizures, but when I've tried both smoking it and the oil for pain control I found it had no benefit at all, and when I took higher doses to the point the negative side effects were quite bad I found no benefit for pain either. I didn't even find the "high" from it particulalry helpful in taking my mind off it, unlike opiates or benzo's often do. I don't doubt it may benefit a number of people, but my bodies physiology/chemistry doesn't seem endeared toward it.

 

[poledriver]

That's a shame.

 

[Crankinit]

Jesus, he refused to give you Sodium fucking Valproate? I was thinking clonazepam, which would at least have some level of twisted logic to it, but sodium valproate has the abuse potential of aspirin. Yep, definite case of asshole doctor here.

I'm thinking of going to another GP to get a refeeral to neuro, and then getting a 2nd opinion from him for my seizure management? Surely a letter from a neuro would certainly make it almost impossible for my doctor to deny me a non-addictive epilepsy medication? I don't know, maybe it comes back to what you're wisely saying about what's morally right doesn't matter once they dig their heels in...

This sounds like your best course of action, other than finding another methadone doctor or coming off methadone entirely (it's your body and health, so you know better than any doctor or anyone here the value of the pain relief the methadone gives you against the value of the seizure relief the epilim - sodium valproate - gives you). You could just go over his head and have the neurologist prescribe the sodium valproate directly - although he'll likely bitch a bit and try to punish you somehow, possibly even refuse to continue giving you methadone, so tread carefully here. Seizures are serious, and your health shouldn't be at stake because you got stuck with a shitty doctor, but the system is what it is.

When he told you why he wouldn't prescribe you the Epilim, did he give an exact reason?

There are channels you can go through, organizations you can call, when you have this kind of problem, I don't know any specifically, and I don't know which state you're in, but I'm sure you could find some with google. Even threatening to call such an organization, or take possible legal action (we are, after all, talking about serious and potentially life threatening medical issues), might cause him to back down - but like going over his head, it might also cause him to try to punish you and control you further, and methadone is his main tool for that, so it's a gamble. I can't advise you which way to go here, since you're the one who knows the doctor and how he's most likely to react, but these options are all available.

Generally people stuck with asshole doctors think they're a great deal more powerless than they really are - it's almost like an abusive relationship, in that respect.

Good luck.

 

[fatstep]

I think its a serious risk going back to your gp and essentially stating you went over his head and he was wrong, I can definitely see him cutting your methadone and DCing u from the practice.. If anything completely explain to the neuro and see if hell just so it bc its not like it's an abuseable med. A neuro will take your seizures fare more serious than this asshole you currently see. Good luck

 

[patientX]

I think its a serious risk going back to your gp and essentially stating you went over his head and he was wrong, I can definitely see him cutting your methadone and DCing u from the practice.. If anything completely explain to the neuro and see if hell just so it bc its not like it's an abuseable med. A neuro will take your seizures fare more serious than this asshole you currently see. Good luck

The reason given is I just can't be trusted at all... this comes down to before I went to a methadone clinic, my daily usage was being between 1500mg and 2000mg of oxy, prescribed by doctors, which means they hugely suspect me of dealing because they don't beleive I could put away that much myself. I needed atleast 400mg per day to stay out of withdrawals. But now I don't see multiple doctors etc. I'm just interested in moving on with my life, and cant see why Epillum, or sodium valporate or w/e, should be witheld even if I was a dealer.

The seizures are ruining my life, and I'm thinking if I'm just going to tell him I'm going to a neuro, and going regardless of what he says, and hoping they somehow facillitate me getting a script.

Otherwise I'm going to either doctor shop for it, or kill myself, as my life at the moment is no way to live. Hell, he's already outright said to me he'd rather see me dead than being a polydrug user :-/ That or robbing a pharmacy or something, really i come to the conclusion if I'm going to die anyway i have nothing to lose, as long as i don't harm anyone i don't really see it as being that unjustiafiable action for someone in my situation, kinda just wish the cancer would hurry up and kill me.

 

[Crankinit]

That's fucked man, but as Epilim has no street value or abuse potential and any idiot should be able to see that, I'm sure you can find a way to get it legitimately. Sometimes you just have to play the system a bit.

 

[patientX]

That's fucked man, but as Epilim has no street value or abuse potential and any idiot should be able to see that, I'm sure you can find a way to get it legitimately. Sometimes you just have to play the system a bit.

Well, I went and saw the neuro today, and had a seizure in while I was in the waiting room, which he witnessed the end of as he was called out to assist. He prescribed me some meds, and wrote a letter strongly encouraging my prescriber to continue the prescription. Either way, I've got 3 months worth of medication now, and a diagnosis of the specific type of epilepsy I have. :-/

As he had a machine which I could be tested on which showed post-seizure brainwaves, it conclusively proves I'm not faking it for meds (which I think my methadone doctor thinks I am).

 

[Crankinit]

Well that's a fucked up way to get what you need, but it sounds like he's going to have no choice but to take you seriously now. Hope he doesn't froth at the mouth too much or be even more of an asshole and try to take your methadone away. If he does the latter then come back and I'm sure someone can connect you to the proper resources to deal with the situation.

 

[spacejunk]

It seems highly, highly unethical - negligent, even - for your doctor to deny you epilepsy medication because you are on methadone.
To me, this seems outrageous.
Doctors like this should not be allowed to practice. I'm so sorry you've had to go through all of this, patientX.

 

[Taobe]

I have edited this post/reply several times over the last 2 hours because the original post made me feel like I needed toB]. This is only my second interaction with the website since joining. I am not here to "hijack" this post. I am not looking for answers about how marijuana will help me or for pity/thanks for my service (ETC.). I am here to speak directly to the poster of this thread.

Tonight, I am/was at the worst pain level I have ever been in, in my life [oxy/morphine/skeletal muscle relaxers and booze ftw!]. This pain stems from my military service connected related injuries (chronic). After 2 shoulder reconstruction surgeries (failed), the MOST I have been taking is 2000 mg of oxycodone a MONTH along with daily morphine and several muscle relaxants. I know we are all wired differently but MY GOD, 2 grams (2000 mg) of oxycodone a DAY even for a highly opiate tolerant individual is..... frankly beyond my understanding and appreciation of pain management. I am only saying this out of harm reduction, but I hope you meant 1500 - 2000 mg per MONTH,....... or even WEEKLY.

In the United States, 1500mg of oxycodone per month would set you back $400-600 dollars. Even with insurance you are looking at around $150.00. I can't fathom what your income level is to afford $150 per DAY in oxycodone. At that price, I would think heroin would be better (from a pain management and a financial point of view [financial harm reduction bluelight admins :] ). I get my meds for free from the Veterans Administration. Unless you have something similar, you are spending around $4,500 USD per month on ONE narcotic medication. This obviously would not consider the cost of your cancer and epilipsy drugs/therapy.

I know that Australia and the USA are miles away in terms of insurance and health care. Am I wrong though about your costs? If I am, I apologize. Maybe you don't pay a dime for anything. If that is the case, I salute you and your access to low/no cost pain/epilepsy/cancer management.

You mention you don't NOW see multiple doctors (in a reply). You also mentioned doctor shopping. In the USA, doctor shopping means you are/(or were) at one time seeing multiple doctors and were given multiple prescriptions for one/multiple drug(s)...... (presumably for the oxycodone you were talking about earlier). I think you were being honest here. I think the only way you could have been given this much oxycodone is/was to "doctor shop".

I am trying my hardest not to be judgmental here. As I mentioned, I am a 100% service connected veteran who fought in wartime and was disabled. (I am talking literal wartime- not the "I was in the area and got the ribbon" wartime). I know you have cancer and epilepsy (from your previous post). I also know about pain. I understand pain- how it feels and how it eats away at your body and soul. For me, when the pain is at its worst [sometimes for days], I think/wish for an honorable way to die. I do NOT want you to think I am some kid who doesn't understand you. Granted I have not had cancer but I hope you can see that I understand pain well.

I know the youngsters here are telling you you're doctor is an asshole. They will tell you how the system sucks and how you should go picket your lawmakers and write letters to whom ever would listen. The truth of the matter is- you were being prescribed way too fucking much pain medicine. PLEASE don't misunderstand me here. I love my pain medicine. I absolutely love oxycodone and morphine. At this stage in my life I would sell my kids (I DON'T have any) for some if I couldn't get my script anymore...... [side note-- add a little rum/alcohol to a oxycodone/morphine coctail and you have a VERY nice evening (okay admins..... THAT is not harm reduction).

I know--> a long post here.

Let me summarize

1) you were/are on too much oxycodone 2) your doctor(s) have caught on to this fact 3) you can say "fuck em" and keep taking too fucking much narcotics (that's always an option btw) or you can say enough and get off them.

In conclusion, I will just say that I love you.

I will say it again. I love you.

Yes, I don't know who you are, BUT you are not alone. Even thought we have never met, we are brothers in pain.

No judgements.

No lectures.

Just love. Sleep well.

 

[Crankinit]

Even without a healthcare card, a box of oxycontin is only $15 or $20, and I believe most of the ''front line'' pain meds (MScontin, kapanol, endone, oxynorm, etc) are around the same. Certainly nothing like the insane and exorbitant cost over in the US.

 

[patientX]

I have edited this post/reply several times over the last 2 hours because the original post made me feel like I needed toB]. This is only my second interaction with the website since joining. I am not here to "hijack" this post. I am not looking for answers about how marijuana will help me or for pity/thanks for my service (ETC.). I am here to speak directly to the poster of this thread.

Tonight, I am/was at the worst pain level I have ever been in, in my life [oxy/morphine/skeletal muscle relaxers and booze ftw!]. This pain stems from my military service connected related injuries (chronic). After 2 shoulder reconstruction surgeries (failed), the MOST I have been taking is 2000 mg of oxycodone a MONTH along with daily morphine and several muscle relaxants. I know we are all wired differently but MY GOD, 2 grams (2000 mg) of oxycodone a DAY even for a highly opiate tolerant individual is..... frankly beyond my understanding and appreciation of pain management. I am only saying this out of harm reduction, but I hope you meant 1500 - 2000 mg per MONTH,....... or even WEEKLY.

In the United States, 1500mg of oxycodone per month would set you back $400-600 dollars. Even with insurance you are looking at around $150.00. I can't fathom what your income level is to afford $150 per DAY in oxycodone. At that price, I would think heroin would be better (from a pain management and a financial point of view [financial harm reduction bluelight admins :] ). I get my meds for free from the Veterans Administration. Unless you have something similar, you are spending around $4,500 USD per month on ONE narcotic medication. This obviously would not consider the cost of your cancer and epilipsy drugs/therapy.

I know that Australia and the USA are miles away in terms of insurance and health care. Am I wrong though about your costs? If I am, I apologize. Maybe you don't pay a dime for anything. If that is the case, I salute you and your access to low/no cost pain/epilepsy/cancer management.

You mention you don't NOW see multiple doctors (in a reply). You also mentioned doctor shopping. In the USA, doctor shopping means you are/(or were) at one time seeing multiple doctors and were given multiple prescriptions for one/multiple drug(s)...... (presumably for the oxycodone you were talking about earlier). I think you were being honest here. I think the only way you could have been given this much oxycodone is/was to "doctor shop".

I am trying my hardest not to be judgmental here. As I mentioned, I am a 100% service connected veteran who fought in wartime and was disabled. (I am talking literal wartime- not the "I was in the area and got the ribbon" wartime). I know you have cancer and epilepsy (from your previous post). I also know about pain. I understand pain- how it feels and how it eats away at your body and soul. For me, when the pain is at its worst [sometimes for days], I think/wish for an honorable way to die. I do NOT want you to think I am some kid who doesn't understand you. Granted I have not had cancer but I hope you can see that I understand pain well.

I know the youngsters here are telling you you're doctor is an asshole. They will tell you how the system sucks and how you should go picket your lawmakers and write letters to whom ever would listen. The truth of the matter is- you were being prescribed way too fucking much pain medicine. PLEASE don't misunderstand me here. I love my pain medicine. I absolutely love oxycodone and morphine. At this stage in my life I would sell my kids (I DON'T have any) for some if I couldn't get my script anymore...... [side note-- add a little rum/alcohol to a oxycodone/morphine coctail and you have a VERY nice evening (okay admins..... THAT is not harm reduction).

I know--> a long post here.

Let me summarize

1) you were/are on too much oxycodone 2) your doctor(s) have caught on to this fact 3) you can say "fuck em" and keep taking too fucking much narcotics (that's always an option btw) or you can say enough and get off them.

In conclusion, I will just say that I love you.

I will say it again. I love you.

Yes, I don't know who you are, BUT you are not alone. Even thought we have never met, we are brothers in pain.

No judgements.

No lectures.

Just love. Sleep well.

* I think I made it clear I was doctor shopping to obtain oxycontin. And yes, it was between 1.5g to 2g per day. I had 6 diff doctors prescribing me 80mg tri daily, plus I was getting 4 weeks worth at a visit (84 tablets), which cos of my healthcare card cost me just ~$6per month per doctor. When you pretty much have free access to drug, and continue seeking full on highs three times a day, it's amazing how quick your tolerance goes up and how much you can handle.

* I'm now a patient at a methadone clinic, however the doctor there has rules saying I can't sqee any other GP's or specialists without his say so, and they can't prescribe me any meds. I do not doctor shop anymore, my pain is controlled and my physcological addiction has gone as well.

* My problem is the methadone doctor won't prescribe my non abuseable epilepsy medicine, which means I've been suffering from seizure on a daily basis... can't drive... can't work... feel like crap. THIS is what I and the other posters in here beleive is unfair.

I don't miss taking the oxy at all, the methadone works well on my pain and my daily pickups means I can't take more than prescribed... I have no self control when it comes to drugs.

BTW, what was the revelance about you being a soldier on the front line combat all about? Are you trying to belittle the fact that in Afghanistan I flew medivac choppers rather than was on the ground fighting. Some would say landing in a hot LZ in an unarmed chopper to give fallen servicemen the best chance of survival is nothing to be sniffed at, but think what you won't it's up to you ultimately.

 

[patientX]

Well, despite the black and white proof I showed the methadone doctor, he's still refusing to prescribe me more meds, and warned me I get prescriptions from any doctor other than him I'll be kicked from the programme, but he didn't tell me not to take the medicine the neuro gave, so there's 3 months covered...

But I've got another, longer term 'band aid' fix lined up: my girlfriend went a different GP to her normal one, said she's swapped to their practice because they have just opened up and are close to her house (which is true), and said she is epileptic and takes Sodium Valporate for it. As it's a completely non abusable med, the GP didn't question it all or ask for test results etc. and he prescibed her 3 months worth aswell, and we'll just keep doing that I think. But at the moment that means I now have 6 months worth, minus about a weeks worth I've already taken.

Hopefully these don't distort my drug test results.... Will ask my neuro when I see him again next week. If it does, I guess I'll just have to stop taking them for however many days necessary before each test (I'm on 3 monthly testing, so atleast it won't be sprung on me as a surprise)...

 

[Christ!]

Well, despite the black and white proof I showed the methadone doctor, he's still refusing to prescribe me more meds, and warned me I get prescriptions from any doctor other than him I'll be kicked from the programme, but he didn't tell me not to take the medicine the neuro gave, so there's 3 months covered...

But I've got another, longer term 'band aid' fix lined up: my girlfriend went a different GP to her normal one, said she's swapped to their practice because they have just opened up and are close to her house (which is true), and said she is epileptic and takes Sodium Valporate for it. As it's a completely non abusable med, the GP didn't question it all or ask for test results etc. and he prescibed her 3 months worth aswell, and we'll just keep doing that I think. But at the moment that means I now have 6 months worth, minus about a weeks worth I've already taken.

Hopefully these don't distort my drug test results.... Will ask my neuro when I see him again next week. If it does, I guess I'll just have to stop taking them for however many days necessary before each test (I'm on 3 monthly testing, so atleast it won't be sprung on me as a surprise)...

I don't think they'll be testing for Epilim on your drug tests. If you're taking a Benzo? That'll probably show up.

Surely your GP wouldn't have a problem with you taking sodium valporate? I don't think it's a good idea to have someone else get a prescription under false pretence for you to use yourself. Talk to your neurologist and ask him what you should do about the situation - maybe with his help you could talk some sense into your Methadone doctor.

Since you're being straight with needing medication and you're not trying to scam abusable meds you should play it completely straight. Get your Doctors working together and you'll get the best care, make sure they know everything you're taking. If you're in a car accident or something and they ring your methadone doctor because he's the one on file they won't get the information that you're on Epilim, and when you're in an acute medical crisis like that the doctors treating you need to know everything you're taking.

Poledriver, due to drug testing I would not be able to try it regarding seizures, but when I've tried both smoking it and the oil for pain control I found it had no benefit at all, and when I took higher doses to the point the negative side effects were quite bad I found no benefit for pain either. I didn't even find the "high" from it particulalry helpful in taking my mind off it, unlike opiates or benzo's often do. I don't doubt it may benefit a number of people, but my bodies physiology/chemistry doesn't seem endeared toward it.

I know you didn't find it useful but I'm yet to hear of a opiate maintenance doctor discontinuing because of a positive drug test for cannabis (even constant positive results for weed)