My mother has end-stage liver disease. My question is how much pain goes along with it? Enough to need a prescription of methadone? The reason I ask is b/c my mother has a history of drug addiction & while her liver specialist isn't prescribing the methadone to her, another physician is. She recently spent 3 weeks with me and was absolutely fine, which means her ammonia levels were normal, she was sleeping throughout the night, up most of the day, even went shopping a couple of times, - BUT, the minute she went back home and got her prescription filled (she was without methadone the entire time she was with me b/c she forgot to bring her prescription with her) the ammonia level went back up, she's been acting clumsy, slurring her words, foggy state of mind, etc..., etc... So in my mind, this is all related to the methadone. While she was staying with me, she complained about some pain; however, she wasn't moaning & groaning, and certainly didn't seem to need anything as strong as methadone. Also, she wasn't going through withdrawals from anything else, so I know she isn't taking the methadone to treat another addiction. What's your opinion?
It does sound like she is in some heavy duty narcotic to me - not necessarily meth. It wouldn't be good to give her THAT much meth as a painkiller if she wasn't on it - enough to make her like that.
Also - meth isn't typically used as a painkiller. And once youre addicted to THAT it's worse than getting off heroin so I'm not really sure why a doctor would prescribe it over something else.
Are you sure that is what she is onn for real?
If you take meth on a daily basis you CANNOT just stop taking it. Something is not right here. If she took it for only 3 days she would be heavily addicted to it - it's physical you know. 3 days worth is enough to do it. And it would be HARD not to see signs of withdrawl.
MDs are starting to use methadone on top of morphine for the synergistic effect (i.e. in this case 1+1=3). When a patient develops a tolerance for morphine compounds such that a larger dose might cause respiratory arrest, you can add methadone to the mix. It doesn't have to be a maintenance type thing.
To answer your question: quite a bit of pain. One fella I knew was at the point where the liver no longer produces whatever it is that holds your blood vessels together, and had large bruises on his arms and legs. Took 30 mg. morph. to get out of bed in the A.M. and go to work to earn the $5,000/mo. it took to buy his IFN and pay for his tests (this was before they started giving it away). Then continued through the day with more morph, oxycodone, and hydrocodone.
Me again........ Okay, the reason I'm trying to get to the bottom of this, i.e. is she in enough pain to need methadone - is because when she's completely out of it, my family doesn't know what to do - like, is it her ammonia level making her act like this or is it the painkillers or is it the ambien (I've read that ambien can induce some pretty strange behavior as well). Again, I don't think she's addicted to other painkillers - trust me, I'd know because my mother's had drug addictions for most of my life (dilaudid & cocaine). I'm to the point of calling the doctor who's prescribing the methadone; however, if she really needs it for pain then I'd hate to screw it up for her.
Me again........ Okay, the reason I'm trying to get to the bottom of this, i.e. is she in enough pain to need methadone - is because when she's completely out of it, my family doesn't know what to do - like, is it her ammonia level making her act like this or is it the painkillers or is it the ambien (I've read that ambien can induce some pretty strange behavior as well).
Just because she isn't "moaning and groaning" is a poor measure of her pain level. I have been through some painful situations (broken discs) and even at my worst pain stages I was not "moaning and groaning" but I was in a tremendous amount of pain. On treatment I have enough pain to require pain med use as do many others on this treatment. I don't know if she is on treatment, but just having advanced liver damage can be painful. If her doctor feels she needs it, I'd listen. It can be very painful to go through what she is going through.
If a person has had a past drug addiction, does that require they must suffer from pain forever? I can understand your fears but withholding pain meds seems cruel. Methadone is commonly used for pain control. Now if her use increases or she takes them incorrectly or something, that is another story but as long as she is following the doctors orders carefully and the pain meds are working for her and she feels better, that is what counts.
Drugs can be "stronger" and the patient can get a more profound reaction due to the liver not functioning optimally, maybe a reduction in dosage would keep her pain at bay but not cause some of the issues you describe?
Sorry to hear about your mom. If she is being prescribed meth (methadone) for pain control, it would be unusual for her to not have it with her while visiting you. Anyone who's been on meth for pain management usually isn't going to forget it, and so - I'm not sure what may have been going on at your house. Meth (to my knowledge) will not cause ammonia levels to rise to the point she is suddenly out of it from ammonia when she gets home. ESLD can be painful. I don't know how "end stage" she is though, and so I can't assume her pain or lack of. Whatever is going on, I hope she'll be OK. Methadone is well... methadone, and as you know it's potential for misuse and abuse is very high (and especially so with your mom's history combined with what might be her feeling of hopelessness now over her liver.) Wishing her the best.
Me again........ Okay, the reason I'm trying to get to the bottom of this, i.e. is she in enough pain to need methadone - is because when she's completely out of it, my family doesn't know what to do - like, is it her ammonia level making her act like this or is it the painkillers or is it the ambien (I've read that ambien can induce some pretty strange behavior as well). Again, I don't think she's addicted to other painkillers - trust me, I'd know because my mother's had drug addictions for most of my life (dilaudid & cocaine). I'm to the point of calling the doctor who's prescribing the methadone; however, if she really needs it for pain then I'd hate to screw it up for her - again, that's why I'm asking: could the pain from end-stage liver disease be so intense as to warrant that strong a painkiller b/c I'm 99% sure she isn't being treated for an addiction to hydro's or anything else. And like I said, the whole time she was up here she didn't appear to be in that much pain. I seriously think this is one of those doctors who'll prescribe anything to anybody & it seriously pisses me off. Her life affects all of my family & I'd hate to think the methadone isn't necessary b/c if it's causing her ammonia levels to go up then in effect, it's killing her.
Me again........ Okay, the reason I'm trying to get to the bottom of this, i.e. is she in enough pain to need methadone - is because when she's completely out of it, my family doesn't know what to do - like, is it her ammonia level making her act like this or is it the painkillers or is it the ambien (I've read that ambien can induce some pretty strange behavior as well). Again, I don't think she's addicted to other painkillers - trust me, I'd know because my mother's had drug addictions for most of my life (dilaudid & cocaine). I'm to the point of calling the doctor who's prescribing the methadone; however, if she really needs it for pain then I'd hate to screw it up for her - again, that's why I'm asking: could the pain from end-stage liver disease be so intense as to warrant that strong a painkiller b/c I'm 99% sure she isn't being treated for an addiction to hydro's or anything else.
It seems this website is having some technical problems so not sure if the message will go through.
I have heard Ambien can cause some really bizarre symptoms in people, I would maybe see if that is the problem. I've heard it can cause strange behavior and strange memory loss, etc. Maybe adjusting her sleep med could use some looking into.
I would not call her doctor behind her back. Have you talked to her about these problems, is that possible? Maybe if you discuss it with her within the context of how she was at your house versus how she is at home you can come up with an answer in how to solve it. Is he eating correctly? Taking her meds with food? Is she on laculose?
Im sure this is stressful on you all, I am sorry you are going through this. I hope some adjustments can be made. Maybe something as simple as changing the sleep medication would help.
It seems that way but that is NOT how they do it, my liver doc does not prescribe pain killers either but refers me to my PCP for that, this is common practice and not something your Mom is
"trying to pull" at all.
she should be on laculose from what I understand, talk to her and have her speak to her liver doctor about it. Maybe you could go with her and discuss your concerns about her relocating with the liver specialist. I would imagine changing traansplant facilities could get very complicated. I can not comment on switching transplant facilities, but possibly someone here can offer some input on that.
Id work with her all the way, going to her PCP for pain meds is not uncommon.
I do think the Ambien could be contributing to her issues, check a quick google for Ambien side effects and you will see why I say that!
Good luck to you, it is hard dealing with a family member with ESLD but to have to deal with it long distance is even harder.
If you do try to go behind her back and try to change her medical care or drug regimen, that could make her feel betrayed or distrustful. She is going through a tremendous amount, you all are, but she is the one dealing with all of this happening to her and I think she should be included in conversations about her and her situation as much as possible.
To answer a few of the questions (and a big thanks to all the responses!):
a) her ammonia levels have been high enough to induce severe hallucinatins, etc... She was hospitalized twice in November with ammonia levels @ 185, which as everyone knows, is very high.
b) she's getting the methadone from a doctor other than her specialist! In fact, the liver specialist won't prescribe painkillers to her at all. Of course my mom has "reasons" for seeing the other doctor - she says her liver specialist told her to see someone else for all her aches and pains, colds, etc... It just seems that he, of all people, would be able to gauge how much pain she could be in & give it to her if he thinks it's medically necessary, right!?
c) she does have lactulose. she's also been prescribe the antibiotic for ammonia build up as well. according to my grandmother, she's taking the methadone as needed but not the antibiotic.
Unfortunately, she lives 7 hours away from me. I'd love to have her up here though! I provide a stress-free environment, I love to cook, + my kids are great for her. The only problem is that she's on the transplant list for Memphis, while I'm in Chicago. Does anyone know if it would be an easy transition or would it not be wise for her to switch over @ this point?
Hi Joe - I know this is tearing your family up. It would me too. The site is not working right so pardon if I am asking questions you've answered.
Do you know if her ammonia levels have ever been elevated to the point of confusion and disorientation? Do you know what other meds she is on besides meth and ambien? Who presribed the ambien? It can cause some bizarre symptoms in some cases, but I don't think it's the culprit of her total disorientation (but it might be.)
If she has had elevated ammonia on account of ESLD and has been disoriented before, most GI docs will put the patient on the Lactulose (it's usually in a great big bottle - like syrup). She would have most likely had this with her when she visited you.
You have to come to a decision - you have to decide, for one, and I think the most pressing is to decide if you think your mom is in danger from the disorientation (no matter what it might be from.) If you think she is, and you want to help her, tell her. Tell her you think someone needs to be involved with her care (or -- that you are afraid she is in trouble with something.) She may well be in severe pain and need the meth. But if her liver is not functioning good, the meth could be sitting around in her blood stream, and she could overdose on the stuff (pretty damn easy.)
If she is not agreeable, then there probably isn't much you can do unless there comes the time you think she is a danger to herself (and she can get that way with ESLD, on meth and ambien, and living alone.) I hope she'll be OK. Best of luck to you.
What sort of pain did your friend complain about? She says she has aches & pains due to the ammonia build up, even her bones hurt. Did your friend eventually fall into a coma or what? It's funny & sad at the same time, because it never occurred to me until recently that people die from cirrohosis - and I'm almost 36 years old. Unbelievable! I've just been getting really pissed at the doctor prescribing the methadone to her because in my mind, if she doesn't need it then don't give it to her b/c drugs have taken her away from me enough as it is. Of course now I'm seeing that maybe it's legitimate.
End stage liver disease is extremely painful and the worst the condition, the worst the pain.
My friend died a little over a year ago, he got so sick and extremely tired went to the doctor and straight to the hospital. He was at end stage liver disease from HepC and did not know he had HepC.
Toward the end he was continueously hitting the button for the pain killers. He could administer it himself. At that stage all you can do is keep that person comfortable.
If your mom has end stage liver disease and she positively has no possible way back from damage. Please let her be comfortable what ever way possible. It is the humaine thing to do. Do not let her suffer un-necessarily.
Find out more about her pain through her doctors and just looking up info. Then speak with her doctor.
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