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Opioid use and the battle withTolerance
Hello all.
I so often like to come here to read and find hope, but I rarely post. I'll apologize for the length up front.
Recently I've been having such a hard time at home and I don't know what to do. My husband has a condition known as New Daily Persistent Headache. The nerves in his head cause a permanent headache that never goes away. If you have heard of phantom limb pain, it is like that, brain creates pain for no reason, it just happens to be in my husband's head. It has been two years now with no change and no help from the specialists.
The only treatment that helps is Opiates. We have been with the pain management doctor for just over a year now, but we are constantly fighting my husband's tolerance. My husband is a big guy and he has always been able to drink and take the strongest medication with no effect on his body what so ever. The opiates are the same for him, they work wonderfully, but for such a short time and one month after he starts his new dose, it stops helping any more than 25% and by two months, he might as well be taking it for nothing more than staving off withdraw (the second battle we seem to always fight). It has become an emotional roller coaster for us both. The temptation most months to take additional pills, even though that makes things worse is too much for him. The pain just gets so bad. He ends up short before his appointment and suffering from withdraw. We've fought, I've screamed and cried, begged him to not do it, he just can't stop himself. I've tried month after month to keep him safe, but he feels like he is always behind what he needs to have life again. It is so hard to be the bad guy and take his medication from him, it makes us fight because he thinks I don't understand all the while I'm just trying to keep him safe and in good graces with his doctor by keeping him on schedule. Being on schedule means no relief and I can't do it month after month, monitoring him like some addict when that isn't at all what he is. He just wants pain relief and to live normally, happily.
The doctor stopped raising his dosage on his pills two months ago and said he will NOT raise them again. He says it is not safe to go higher. I don't think he is all that high, 30 mg 1.5 pills four times a day, but the doctor says no higher will he go. We started the Fentanyl patches when they topped him off, and they helped for about two weeks, but then things got much worse. We were in a panic and the doctor's response last appointment was to double the Fentanyl patch with the same pill dosage. That was no help at all and no my husband feels hopeless.
I don't know how to fight the tolerance and help my husband anymore. I want him to be pain free for at least four hours or so and have some measure of relief the rest of the time, even if not 100%. We are trying our best to get through to December when the PMP has my husband going into a trial for the implant. The doctor has high hopes that the implant will help us, but the trial is not until December and we can't afford to pay for it without the trial. At the same time, the PMP doesn't seem to care about keeping my husband comfortable between now and then. I don't know what to say and how to help my husband at all anymore. The depression is spiraling him down and all we hear is that they just 'can't raise him'. That it isn't safe. I worry what he will turn to when he doesn't get help and that the doctors just don't understand or care to listen.
Does anyone have any advice or know anything that either helps slow down tolerance or turn back the clock? If only his pills can help for longer before they become too ineffective, making him want to take more, I know he could get by and follow his dosage. He really WANTS to be good, but he can't stand loosing his life more week after week thinking the doctor isn't going to change things. It seems like all the distribution over time medications don't help him at all (morphine, opana, Fentanyl patch), and the short term pills my husband should be using for short term sudden bleed through have become his only means to find relief, and it just seems to speed us up in a battle we can't win.
I so often like to come here to read and find hope, but I rarely post. I'll apologize for the length up front.
Recently I've been having such a hard time at home and I don't know what to do. My husband has a condition known as New Daily Persistent Headache. The nerves in his head cause a permanent headache that never goes away. If you have heard of phantom limb pain, it is like that, brain creates pain for no reason, it just happens to be in my husband's head. It has been two years now with no change and no help from the specialists.
The only treatment that helps is Opiates. We have been with the pain management doctor for just over a year now, but we are constantly fighting my husband's tolerance. My husband is a big guy and he has always been able to drink and take the strongest medication with no effect on his body what so ever. The opiates are the same for him, they work wonderfully, but for such a short time and one month after he starts his new dose, it stops helping any more than 25% and by two months, he might as well be taking it for nothing more than staving off withdraw (the second battle we seem to always fight). It has become an emotional roller coaster for us both. The temptation most months to take additional pills, even though that makes things worse is too much for him. The pain just gets so bad. He ends up short before his appointment and suffering from withdraw. We've fought, I've screamed and cried, begged him to not do it, he just can't stop himself. I've tried month after month to keep him safe, but he feels like he is always behind what he needs to have life again. It is so hard to be the bad guy and take his medication from him, it makes us fight because he thinks I don't understand all the while I'm just trying to keep him safe and in good graces with his doctor by keeping him on schedule. Being on schedule means no relief and I can't do it month after month, monitoring him like some addict when that isn't at all what he is. He just wants pain relief and to live normally, happily.
The doctor stopped raising his dosage on his pills two months ago and said he will NOT raise them again. He says it is not safe to go higher. I don't think he is all that high, 30 mg 1.5 pills four times a day, but the doctor says no higher will he go. We started the Fentanyl patches when they topped him off, and they helped for about two weeks, but then things got much worse. We were in a panic and the doctor's response last appointment was to double the Fentanyl patch with the same pill dosage. That was no help at all and no my husband feels hopeless.
I don't know how to fight the tolerance and help my husband anymore. I want him to be pain free for at least four hours or so and have some measure of relief the rest of the time, even if not 100%. We are trying our best to get through to December when the PMP has my husband going into a trial for the implant. The doctor has high hopes that the implant will help us, but the trial is not until December and we can't afford to pay for it without the trial. At the same time, the PMP doesn't seem to care about keeping my husband comfortable between now and then. I don't know what to say and how to help my husband at all anymore. The depression is spiraling him down and all we hear is that they just 'can't raise him'. That it isn't safe. I worry what he will turn to when he doesn't get help and that the doctors just don't understand or care to listen.
Does anyone have any advice or know anything that either helps slow down tolerance or turn back the clock? If only his pills can help for longer before they become too ineffective, making him want to take more, I know he could get by and follow his dosage. He really WANTS to be good, but he can't stand loosing his life more week after week thinking the doctor isn't going to change things. It seems like all the distribution over time medications don't help him at all (morphine, opana, Fentanyl patch), and the short term pills my husband should be using for short term sudden bleed through have become his only means to find relief, and it just seems to speed us up in a battle we can't win.
Okay.... I do believe you and it is terrible that both you and your husband have your lives consumed by this.
It was just that his behaviour reads so differently to other chronic pain sufferers on this site.....
But I DO accept you know your husband after 16 years of marriage...
And GOOD LUCK! I really do wish you and your husband all the best and hope there is an end for his suffering so one day you can look back and all this is behind you :-)
It was just that his behaviour reads so differently to other chronic pain sufferers on this site.....
But I DO accept you know your husband after 16 years of marriage...
And GOOD LUCK! I really do wish you and your husband all the best and hope there is an end for his suffering so one day you can look back and all this is behind you :-)
Yes, my husband goes to great lengths to get his medication. But it has always been HIS medication he has reclaimed. It is my fault for only mentioning the bad stuff he's done and not all the strides he has made in the right direction. And as a person who knows him better than any other, no my husband does not get high. You will have to take my word for that, but I've known him for 16 years. My word means something.
Did he spend three hours getting into a safe to get to his own pills when I wasn't home, yes he did, because he was in that much pain and what was in that safe was the only thing to stop it. It was his desperation to make the pain stop that motivated him, nothing else. If he'd felt any other hope, if he felt he had any other options, maybe things would be different, but we hadn't found anything else. I can't stress this enough.
My pills are in a bottle and I DO count them regularly and track what I take. If even one was missing I'd be all over him. But that hasn't happened. In the beginning my husband was offended a bit that I didn't trust him, but with his behaviors, he knows it is the only way he can gain trust back. Now that he has his medication in his control, it is his choice. I find it is easier for us both to monitor his mood and the more long nights and early morning I find him in not so great condition, I know the medication is being followed. I don't like it at all, but it means he is trying to deal with it and I support him. If I saw the mornings being too good for too long, if it looks too good to be true, I know to ask how much he has taken, and then if I need to, lecture. So far the fear of withdraw has been a powerful thing. If he has taken extra one day, he has cut himself off the next until he is back on schedule. He even cut back proactively this month which was unexpected, but I am very proud of him. Pain is bad, pain and withdraw is worse.
I appreciate that you all have mentioned that you are addicts yourself and you know the feeling, but I wonder what feeling would that be? Is it the feelings that you need to get high? or is it the need to get rid of pain? If it is to get high, that isn't it.
Let me me list off all the things we tried BEFORE narcotics. I should have done this a while ago to give some brevity to how far we have gone, and why we feel rather hopeless at times. He's seen 12 different doctors not counting the PMPs. He's had acupuncture, message and realignment with a chiropractor, and he still practices his mediation, though anxiety still gets the best of him. For medications, it is quite the list. We started with over the counter, Aleve, Advil, Tylenol, for prescriptions I'll just list off the trade names, Medrol, Treximet, AlleRx, Indocin, Nasonex, Skelaxin, Lexapro, Ketorolac, Elavil, Lyrica, Fioricet, Topamax, Prednisone (injections), Xanax (which helped, but left him unable to function, he didn't want any more of it), Naproxen, Compazine (which he still takes on occasion though for anxiety, not pain), Vitamin B1, Alpha Lipoic Acid, Neurontin, Vitamin B-complex, Vitamin D, Feverfew, Toprol, Ultram. Then came the Lortab which the first thing to help at all. After Lortab we kept working with Jefferson Frova, Butalbital, Zyprexa, Verapamil ER, Migranal, Zheng Tian Wan 999, and the one we had the highest hopes for, Depakote. We tried that for higher and higher doses for several months but it didn't work, so the PMP added first Percoset, then moved to the same dose but in Oxycodone because the Tylenol in Percoset reached badly with the Depakote. We did the hospital stays with Jefferson for the drug infusions and my husband was off his pain meds for those. They were mainly DHE, Benadryl, Depakote, Ketorolac, Reglan, Clonodine, Ativan, Heparin, Driperidol, Lidocaine, and Keppra. Some of those were for the anxiety of being forced to stay in bed in pain as well as some withdraw. My husband decided to return to PMP after the last Jefferson visit. He told the PMP he didn't want to go up in dose, but the pills were not lasting for the whole day. They gave him Opana ER, which had little effect. They raised the Opana ER dose and when that still didn't help and he admitted taking extra, the doctor agreed to up the dose of the Oxy. We then tried MS Contin (sp?) with was a morphine base, and no effect. Morphine in the hospital had no effect on him either.
The oxy was increased once again, because the doctor felt better about that then increasing either Opana or the Morphine. The mistake then was, he also took my husband off his antidepressants. I think that was a huge contributor to my husbands break down and his shame of what he had done led him to hide it. Of course all that anxiety and fighting just made it harder. Before he left the practice three months ago, we both got to meet with the PMP in person and that was when he introduced the Fenyl patch and I strongly urged them both to work with the antidepressants again.
For three months things have been open and honest. It took a lot of working together and not so great times, but I've seen vast improvements. I need to work on the fear with him and acceptance of his conditions not just his dependency.
Did he spend three hours getting into a safe to get to his own pills when I wasn't home, yes he did, because he was in that much pain and what was in that safe was the only thing to stop it. It was his desperation to make the pain stop that motivated him, nothing else. If he'd felt any other hope, if he felt he had any other options, maybe things would be different, but we hadn't found anything else. I can't stress this enough.
My pills are in a bottle and I DO count them regularly and track what I take. If even one was missing I'd be all over him. But that hasn't happened. In the beginning my husband was offended a bit that I didn't trust him, but with his behaviors, he knows it is the only way he can gain trust back. Now that he has his medication in his control, it is his choice. I find it is easier for us both to monitor his mood and the more long nights and early morning I find him in not so great condition, I know the medication is being followed. I don't like it at all, but it means he is trying to deal with it and I support him. If I saw the mornings being too good for too long, if it looks too good to be true, I know to ask how much he has taken, and then if I need to, lecture. So far the fear of withdraw has been a powerful thing. If he has taken extra one day, he has cut himself off the next until he is back on schedule. He even cut back proactively this month which was unexpected, but I am very proud of him. Pain is bad, pain and withdraw is worse.
I appreciate that you all have mentioned that you are addicts yourself and you know the feeling, but I wonder what feeling would that be? Is it the feelings that you need to get high? or is it the need to get rid of pain? If it is to get high, that isn't it.
Let me me list off all the things we tried BEFORE narcotics. I should have done this a while ago to give some brevity to how far we have gone, and why we feel rather hopeless at times. He's seen 12 different doctors not counting the PMPs. He's had acupuncture, message and realignment with a chiropractor, and he still practices his mediation, though anxiety still gets the best of him. For medications, it is quite the list. We started with over the counter, Aleve, Advil, Tylenol, for prescriptions I'll just list off the trade names, Medrol, Treximet, AlleRx, Indocin, Nasonex, Skelaxin, Lexapro, Ketorolac, Elavil, Lyrica, Fioricet, Topamax, Prednisone (injections), Xanax (which helped, but left him unable to function, he didn't want any more of it), Naproxen, Compazine (which he still takes on occasion though for anxiety, not pain), Vitamin B1, Alpha Lipoic Acid, Neurontin, Vitamin B-complex, Vitamin D, Feverfew, Toprol, Ultram. Then came the Lortab which the first thing to help at all. After Lortab we kept working with Jefferson Frova, Butalbital, Zyprexa, Verapamil ER, Migranal, Zheng Tian Wan 999, and the one we had the highest hopes for, Depakote. We tried that for higher and higher doses for several months but it didn't work, so the PMP added first Percoset, then moved to the same dose but in Oxycodone because the Tylenol in Percoset reached badly with the Depakote. We did the hospital stays with Jefferson for the drug infusions and my husband was off his pain meds for those. They were mainly DHE, Benadryl, Depakote, Ketorolac, Reglan, Clonodine, Ativan, Heparin, Driperidol, Lidocaine, and Keppra. Some of those were for the anxiety of being forced to stay in bed in pain as well as some withdraw. My husband decided to return to PMP after the last Jefferson visit. He told the PMP he didn't want to go up in dose, but the pills were not lasting for the whole day. They gave him Opana ER, which had little effect. They raised the Opana ER dose and when that still didn't help and he admitted taking extra, the doctor agreed to up the dose of the Oxy. We then tried MS Contin (sp?) with was a morphine base, and no effect. Morphine in the hospital had no effect on him either.
The oxy was increased once again, because the doctor felt better about that then increasing either Opana or the Morphine. The mistake then was, he also took my husband off his antidepressants. I think that was a huge contributor to my husbands break down and his shame of what he had done led him to hide it. Of course all that anxiety and fighting just made it harder. Before he left the practice three months ago, we both got to meet with the PMP in person and that was when he introduced the Fenyl patch and I strongly urged them both to work with the antidepressants again.
For three months things have been open and honest. It took a lot of working together and not so great times, but I've seen vast improvements. I need to work on the fear with him and acceptance of his conditions not just his dependency.
Hi Yidori. I am so sorry you and your husband are going through this. Neither one of you are happy. But I am concerned for YOU.... it does seem as though your life has been completely taken over by this......I know marriage is for better or worse, but it does sound like you have had more that your share of worsts :-(
I am a bit hesitant to post because I know this wonderful forum is full of genuine chronic pain sufferes, that follow their PM's advice/Contact perfectly, and who take the lowest amount of their pain pills possible to treat their pain so they can still function in their lives.... but I can't help feeling along the same lines as LMNO, that a lot of your husbands behaviour is classic addict behavior. His behaviour reads VERY diffrentley to other regulars on this board who are so very careful to follow their pain management contracts..... I am actually an addict in recovery, and I can relate to a lot of his behaviour in my past :-(
I too, don't doubt that your husband has pain.... I agree with you about the safe.... if you have a servere headache..... are you going to be able or willing to sit for 3 hours trying to crack a safe? Not once but 3 times? I know you said he has never touched your pain med's... I really am a bit reluctant to ask.... but is it in a bottle or blister pack? I know I may be completely wrong and may get backlash for this post.... but the levels of deception your husband will go to to get pills.... really has me wondering. Also - if I had this New Daily Persistent Headache - I would be the one googling to see how I could get any kind of relief...... as LMNO asked - is it your husband or the doctor that said he will ONLY get releif from opiates?
I know you said that in hospital, he did not appear 'high' on high doses of opiates, but I know when I was using, I appreard VERY high functioning, people were shocked to know that I had been really quite affected around them... some people can hide it really well.
The thing is, YOUR life has been completely taken over by this.I am concerned is for you... you mention his anger, and not being able to go to the movies because he'll cause a scene yelling and cursing......
So what I'm wondering, is it possible for you to do a bit of 'tough love'..... tell your husband that he cannot lie or decieve you for pills because it's affecting you too much, he needs to respect you and if he DOES decieve you for pills there will be concequences? Because I'm thinking you cannot live this way for the rest of your life.
The thing is tolererance will ALWAYS be a factor with opiates.... you need to somehow find a way to break this cycle.... or it will go on for the REST of your life! What if you said to him that if he does decieve you again, you will 'give up' and let him have control of the pills....because then I think we all know what will happen.... he will use the months supply in a week and end up cut off. Which would be TERRIBLE..... but perhaps if you say that you cannot live this way any more, he will get some respect and follow his contract and not badger or decieve you for pills.
You are still a young woman. It must be very hard to live like this, and I do genuinely hope somehow there is an answer for you and your husband.... that will stop both of your lives being consumed by this..... and I hope my post has not upset you or any other members of this board....
Best wishes,
Perch.
I am a bit hesitant to post because I know this wonderful forum is full of genuine chronic pain sufferes, that follow their PM's advice/Contact perfectly, and who take the lowest amount of their pain pills possible to treat their pain so they can still function in their lives.... but I can't help feeling along the same lines as LMNO, that a lot of your husbands behaviour is classic addict behavior. His behaviour reads VERY diffrentley to other regulars on this board who are so very careful to follow their pain management contracts..... I am actually an addict in recovery, and I can relate to a lot of his behaviour in my past :-(
I too, don't doubt that your husband has pain.... I agree with you about the safe.... if you have a servere headache..... are you going to be able or willing to sit for 3 hours trying to crack a safe? Not once but 3 times? I know you said he has never touched your pain med's... I really am a bit reluctant to ask.... but is it in a bottle or blister pack? I know I may be completely wrong and may get backlash for this post.... but the levels of deception your husband will go to to get pills.... really has me wondering. Also - if I had this New Daily Persistent Headache - I would be the one googling to see how I could get any kind of relief...... as LMNO asked - is it your husband or the doctor that said he will ONLY get releif from opiates?
I know you said that in hospital, he did not appear 'high' on high doses of opiates, but I know when I was using, I appreard VERY high functioning, people were shocked to know that I had been really quite affected around them... some people can hide it really well.
The thing is, YOUR life has been completely taken over by this.I am concerned is for you... you mention his anger, and not being able to go to the movies because he'll cause a scene yelling and cursing......
So what I'm wondering, is it possible for you to do a bit of 'tough love'..... tell your husband that he cannot lie or decieve you for pills because it's affecting you too much, he needs to respect you and if he DOES decieve you for pills there will be concequences? Because I'm thinking you cannot live this way for the rest of your life.
The thing is tolererance will ALWAYS be a factor with opiates.... you need to somehow find a way to break this cycle.... or it will go on for the REST of your life! What if you said to him that if he does decieve you again, you will 'give up' and let him have control of the pills....because then I think we all know what will happen.... he will use the months supply in a week and end up cut off. Which would be TERRIBLE..... but perhaps if you say that you cannot live this way any more, he will get some respect and follow his contract and not badger or decieve you for pills.
You are still a young woman. It must be very hard to live like this, and I do genuinely hope somehow there is an answer for you and your husband.... that will stop both of your lives being consumed by this..... and I hope my post has not upset you or any other members of this board....
Best wishes,
Perch.
I just read that you have been to Jefferson. I wish I had some kind of advice. I guess that if it were me, I would keep searching for an effective treatment, and pray that the trial works. I can't imagine having a constant headache like that.
Wow. I'm so sorry that you and your husband are going through so much. Have you been to a major university hospital? Sometimes they are more equipped to deal with things like this. In regard to the pain medication, I have no advice. I understand, and agree with Elemenoh though.
Are there any other non-opiate treatments that have been recommended, or that you can try? Can you keep searching for doctors, and for answers? It seems that his tolerance will just keep going up, and that can be difficult, as many doctors are reluctant to prescribe very high doses. I don't think that the answer is always more medication. There has to be something else that they can do for him. I know that you're waiting for a trial, and I hope that it helps. I really hope that he can find some relief soon.
Can you talk to him again about going to therapy? I feel so bad, because you don't deserve to be treated that way. It's difficult, to say the least, to be in pain every single day, but it's still very important not to treat loved ones poorly. I feel so sad for you.
I hope and pray that you find answers.
Hugs,
Flower
Are there any other non-opiate treatments that have been recommended, or that you can try? Can you keep searching for doctors, and for answers? It seems that his tolerance will just keep going up, and that can be difficult, as many doctors are reluctant to prescribe very high doses. I don't think that the answer is always more medication. There has to be something else that they can do for him. I know that you're waiting for a trial, and I hope that it helps. I really hope that he can find some relief soon.
Can you talk to him again about going to therapy? I feel so bad, because you don't deserve to be treated that way. It's difficult, to say the least, to be in pain every single day, but it's still very important not to treat loved ones poorly. I feel so sad for you.
I hope and pray that you find answers.
Hugs,
Flower
Thank you for your concerns and desire to help. It does mean a lot and it doesn't anger me. We used to use the A word in the house because that seemed to be the right word to use, you're an addict but you can't help it. Now we say Dependant because that is what he is. It isn't getting high my husband seeks. He has never been high on his meds. Hard to believe, but he just doesn't get that reaction. All the years I've know him (and he had pain pills after surgery before, and infected root canals) he has never been 'high'. Xanax was the closest he ever came to being out of his mind so to speak, and it scared both of us so bad, he never wanted to take it again.
My husband was in pain with no relief at all for almost a year when his PCP doctor gave him Lortab. He let him use it for a week or so and it took the pain away. My husband was relieved, but when the week was out and the pain came back, it was devistating to him. His PCP didn't want to keep doing it and advised us that with my husbands tolerance increasing as rapidly as he suspected it would, he didn't want to do it. We had agruments and nights of thinking about killing himself, bad doctors appoitments, therapy visits... My husband's begging led to his doctor to sending us to the first PMP that cancelled his appointment and refused to see him, even without meeting him for fear he was an addict. Still his PCP said no pills and my husband was frantic.
Before he would schedule us with another PMP, his PCP insisted on monitoring him with a hospital stay where he was permitted to have pain medication while undergoing some tests. His PCP was amazed that my husband just didn't get 'high'. The whole time he was there, he would smile and read, play his computer, talk to the nurses and me, he never showed any sign at all that he'd had his pills other than the pain going away. The next day when my husband sat crying because the pain was back and there was no more meds, he sent us to the PMP that we have now.
My husband's temper and mood changes with his pain. His anxiety changes with his pain. His fault is, when he started with the PMP, he had this expectation that he would be 100% pain free, and that anything less meant his medication wasn't working. The PMP started him out below what he had been given by his PCP. We were already behind at that point. So the cycle began right away. My husband would take his pills, and either the pain would not go away 100%, or after an hour or so, it would return. He'd take another pill even though it was early, and then the pain would go away - rewarded. This became his cycle and he just could not break it. He never broke the law. He has never gone outside the PMP for pills, nor gone to the streets, though he can't help but think about when it is hard. The pain relief makes him feel like 'himself' again. The guy he was without pain. The guy who married me and everyone likes to hang out with. The guy in pain no one likes and doesn't take his wife out to dinner. That guy has a hard time working to support himself and just feels depressed all the time. He hates being 'that guy'. That is what he wants to escape, but the process just isn't healthy and isn't feasible. The things he has done, decieving me, the desperation he has shown, has always been for what he was legally given. I know if he is to become better and manage his life, he needs to manage his medication. I can be there when he falls, but I can only prevent the fall through teaching and will power, not by taking the choice from him.
It is VERY hard. I imagine a parent trying to live with their children's decisions instead of making them for them. If they don't learn, how will they handle it when they are on their own.
The biggest reason I say my husband isn't an addict is, I have pelvic problems and I get myself into trouble lifting and bending, climbing, things I used to do years ago but need to be more careful with. I have very painful periods with lower back and pelvic pain, and MY doctor gives me pain meds. Mine are not a strong dosage, but my PCP gives me 50-60 at a time and I might take 12-24 a year (they tend to upset my stomach, so I better be in so much pain that throwing up all day is worth it). My husband has NEVER touched my meds. In desperation I've even offered and he won't take them. He doesn't want ME to be in pain and without medication. He doesn't want me to become him or fear what it is like to deal with pain even for a short period of time.
My sister was a heroin addict and took pain pills, cocaine, anything she could find. She would not in those days have left me with a single pill if she had found them. She would have taken them and hoped that being my sister, would soften me up enough to not report her to the police. She (thank the lord) has been clean for nearly three years and it is still hard for her. The tempation to teach my husband the ropes and where to go has been hard for her, but my husband told her if she even TRIED to do it, he'd report her to me and then she'd be right back to rehab, if she is luckly, with all her bones in tact!
My husband was in pain with no relief at all for almost a year when his PCP doctor gave him Lortab. He let him use it for a week or so and it took the pain away. My husband was relieved, but when the week was out and the pain came back, it was devistating to him. His PCP didn't want to keep doing it and advised us that with my husbands tolerance increasing as rapidly as he suspected it would, he didn't want to do it. We had agruments and nights of thinking about killing himself, bad doctors appoitments, therapy visits... My husband's begging led to his doctor to sending us to the first PMP that cancelled his appointment and refused to see him, even without meeting him for fear he was an addict. Still his PCP said no pills and my husband was frantic.
Before he would schedule us with another PMP, his PCP insisted on monitoring him with a hospital stay where he was permitted to have pain medication while undergoing some tests. His PCP was amazed that my husband just didn't get 'high'. The whole time he was there, he would smile and read, play his computer, talk to the nurses and me, he never showed any sign at all that he'd had his pills other than the pain going away. The next day when my husband sat crying because the pain was back and there was no more meds, he sent us to the PMP that we have now.
My husband's temper and mood changes with his pain. His anxiety changes with his pain. His fault is, when he started with the PMP, he had this expectation that he would be 100% pain free, and that anything less meant his medication wasn't working. The PMP started him out below what he had been given by his PCP. We were already behind at that point. So the cycle began right away. My husband would take his pills, and either the pain would not go away 100%, or after an hour or so, it would return. He'd take another pill even though it was early, and then the pain would go away - rewarded. This became his cycle and he just could not break it. He never broke the law. He has never gone outside the PMP for pills, nor gone to the streets, though he can't help but think about when it is hard. The pain relief makes him feel like 'himself' again. The guy he was without pain. The guy who married me and everyone likes to hang out with. The guy in pain no one likes and doesn't take his wife out to dinner. That guy has a hard time working to support himself and just feels depressed all the time. He hates being 'that guy'. That is what he wants to escape, but the process just isn't healthy and isn't feasible. The things he has done, decieving me, the desperation he has shown, has always been for what he was legally given. I know if he is to become better and manage his life, he needs to manage his medication. I can be there when he falls, but I can only prevent the fall through teaching and will power, not by taking the choice from him.
It is VERY hard. I imagine a parent trying to live with their children's decisions instead of making them for them. If they don't learn, how will they handle it when they are on their own.
The biggest reason I say my husband isn't an addict is, I have pelvic problems and I get myself into trouble lifting and bending, climbing, things I used to do years ago but need to be more careful with. I have very painful periods with lower back and pelvic pain, and MY doctor gives me pain meds. Mine are not a strong dosage, but my PCP gives me 50-60 at a time and I might take 12-24 a year (they tend to upset my stomach, so I better be in so much pain that throwing up all day is worth it). My husband has NEVER touched my meds. In desperation I've even offered and he won't take them. He doesn't want ME to be in pain and without medication. He doesn't want me to become him or fear what it is like to deal with pain even for a short period of time.
My sister was a heroin addict and took pain pills, cocaine, anything she could find. She would not in those days have left me with a single pill if she had found them. She would have taken them and hoped that being my sister, would soften me up enough to not report her to the police. She (thank the lord) has been clean for nearly three years and it is still hard for her. The tempation to teach my husband the ropes and where to go has been hard for her, but my husband told her if she even TRIED to do it, he'd report her to me and then she'd be right back to rehab, if she is luckly, with all her bones in tact!
I'll reiterate what I said in my post... I'm not saying he IS an addict, but his behavior would lead me to look in that direction.
Again, only YOU can say for sure, as YOU are actually in the situation, so if I'm off base, please tell me and I'll endeavor to go down a different line of thought.
No matter how debilitating his pain is, the behavior that he's exhibiting is 'classic' addictive behavior, and I believe it would be remise of me to not mention my opinion.
You are in a difficult situation, my friend, and I feel YOUR pain, as well as his.
Again, I DO hesitate to use the "A word" in this forum, but in this instance, I believe the writing is on the wall (so to speak).
I look forward to hearing from you Yidori.
LMNO
Again, only YOU can say for sure, as YOU are actually in the situation, so if I'm off base, please tell me and I'll endeavor to go down a different line of thought.
No matter how debilitating his pain is, the behavior that he's exhibiting is 'classic' addictive behavior, and I believe it would be remise of me to not mention my opinion.
You are in a difficult situation, my friend, and I feel YOUR pain, as well as his.
Again, I DO hesitate to use the "A word" in this forum, but in this instance, I believe the writing is on the wall (so to speak).
I look forward to hearing from you Yidori.
LMNO
I do in some ways agree with the last post.
I am not saying he is not in awful depleting head pain, but you have to wonder about that if he can sit for 3hrs straight trying to unlock a safe....
Again, not questioning his pain, but however, I do feel he is addicted, not dependent at this point.
You really need to discuss his actions with his doctors. This is not a road you want to go down..
I am not saying he is not in awful depleting head pain, but you have to wonder about that if he can sit for 3hrs straight trying to unlock a safe....
Again, not questioning his pain, but however, I do feel he is addicted, not dependent at this point.
You really need to discuss his actions with his doctors. This is not a road you want to go down..
***Correct me if I'm wrong, and call me out if you think I'm way off base***
*Running out of meds early...
*Sneaking around behind your back and going into your purse...
*Breaking into (3) different safes that you bought, specifically to keep him from taking too much... (and doing it in a very sneaky way)
*Getting angry at you for trying to control his medication...
*Him wanting ever increasing doses, and not ever being able to "get enough"...
I'm not an expert, but what you've described points to him having crossed over from 'med dependent' to 'addicted'. I started off in Pain-Management, but graduated to Addict, some years back, and post both here and in the 'substance abuse' forums. I'm sort of "caught in the middle", if you will, as I continue to have chronic-pain, but also continue to be a recovering-addict.
I know that 'addict' is a bad word in this forum, so I always hesitate to use it, but after reading your posts (both current & past), I think most will agree that your husband fits the bill.
I've sent you a private-message, and hope that you will respond.
If you think I'm wrong, out of line, off base, or just plain delusional, please call me out. I've been wrong before, and am always ready, willing & able to accept that I'm mistaken.
I have NO doubt that your husband is in pain, and I feel for him, really I do. What he's got going on sounds horrible, and I wouldn't wish it on anyone. I know you said that there's no way for him to deal with his pain besides opiates, but do you say that because it's what HE'S told you, or what doctors have told you?
Please write/respond to my PM... I look forward to hearing from you.
LMNO
*Running out of meds early...
*Sneaking around behind your back and going into your purse...
*Breaking into (3) different safes that you bought, specifically to keep him from taking too much... (and doing it in a very sneaky way)
*Getting angry at you for trying to control his medication...
*Him wanting ever increasing doses, and not ever being able to "get enough"...
I'm not an expert, but what you've described points to him having crossed over from 'med dependent' to 'addicted'. I started off in Pain-Management, but graduated to Addict, some years back, and post both here and in the 'substance abuse' forums. I'm sort of "caught in the middle", if you will, as I continue to have chronic-pain, but also continue to be a recovering-addict.
I know that 'addict' is a bad word in this forum, so I always hesitate to use it, but after reading your posts (both current & past), I think most will agree that your husband fits the bill.
I've sent you a private-message, and hope that you will respond.
If you think I'm wrong, out of line, off base, or just plain delusional, please call me out. I've been wrong before, and am always ready, willing & able to accept that I'm mistaken.
I have NO doubt that your husband is in pain, and I feel for him, really I do. What he's got going on sounds horrible, and I wouldn't wish it on anyone. I know you said that there's no way for him to deal with his pain besides opiates, but do you say that because it's what HE'S told you, or what doctors have told you?
Please write/respond to my PM... I look forward to hearing from you.
LMNO
Hi,
I am new here, and couldn't help but read with your response and empathize.
There are medications that help AUGMENT (Increase the effectiveness of the opoids), and thus keep the need for continual increases to at least a minimum (doesn't STOP them, but it helps; I have RSD, a nerve pain condition as well (http:www.rsdsa.org/ ).
I will send you a message, I can give you the specifics that my PM uses, and it does help to keep the dosage changes to a minimum, and the meds I use (and know I have NEVER done that, but I know that it's so important to be able to KEEP using them....I am still in my 30's (obviously from the "jenna37 handle...duh!!!! LOL").
I have the same problem with getting wordy--its so hard to find folks you can trust to talk to that aren't going to "cyber-stalk" you and rake you about the drugs!!!! It's awful--try throwing in a nursing background, and having the addicts beating down your email (how do they GET IT?????????) or message box and wanting how to know to mix their meds--sigh--I have no patience for that, because I suffered needlessly for years before finding a PM doc who GETS IT!!!!!
And he doesn't use "contracts" with anyone. He's wise enough to spot a BS-er (like the ones who look like a gang-banger that caims no insurance and pays in cash? Then produces an MRI that's been clearly "doctored" on the name, or has no name on the disc--which has no letterhead on it??? Hmmmm. So he sends a letter on them to all the area ER's that this patient is now under his care, please send any reports to this fax number....he then proceeds to hand them, at the next appt a schedule list for NA, a prescription for Suboxone, and tells them that is ALL they will get if they want to continue, and 99% don't come back, and calls the chain pharmacies and tells them the narcotics HAVE BEEN DISCONTINUED!!!! GOD LOVE HIM!!! He only asks that you leave him a voice mail if you are going to the ER, why, and how you're getting there--or if it was a life-threatening one, to have the ER notify his service and you're cool.). I have only see him cut off one person COLD TURKEY, and cal the pharmacy right then; and that woman was so high that she was lost finding the building, and called for directions from the lobby of the first floor....he's on the 2nd floor...jeez!!!)
But I digress, I will get on that message. Know my heart goes out to you and your hubby,
Blessings,
Jenna37
PS, and I am quite conscious 18 hours/day, and alert and oriented!!!
I am new here, and couldn't help but read with your response and empathize.
There are medications that help AUGMENT (Increase the effectiveness of the opoids), and thus keep the need for continual increases to at least a minimum (doesn't STOP them, but it helps; I have RSD, a nerve pain condition as well (http:www.rsdsa.org/ ).
I will send you a message, I can give you the specifics that my PM uses, and it does help to keep the dosage changes to a minimum, and the meds I use (and know I have NEVER done that, but I know that it's so important to be able to KEEP using them....I am still in my 30's (obviously from the "jenna37 handle...duh!!!! LOL").
I have the same problem with getting wordy--its so hard to find folks you can trust to talk to that aren't going to "cyber-stalk" you and rake you about the drugs!!!! It's awful--try throwing in a nursing background, and having the addicts beating down your email (how do they GET IT?????????) or message box and wanting how to know to mix their meds--sigh--I have no patience for that, because I suffered needlessly for years before finding a PM doc who GETS IT!!!!!
And he doesn't use "contracts" with anyone. He's wise enough to spot a BS-er (like the ones who look like a gang-banger that caims no insurance and pays in cash? Then produces an MRI that's been clearly "doctored" on the name, or has no name on the disc--which has no letterhead on it??? Hmmmm. So he sends a letter on them to all the area ER's that this patient is now under his care, please send any reports to this fax number....he then proceeds to hand them, at the next appt a schedule list for NA, a prescription for Suboxone, and tells them that is ALL they will get if they want to continue, and 99% don't come back, and calls the chain pharmacies and tells them the narcotics HAVE BEEN DISCONTINUED!!!! GOD LOVE HIM!!! He only asks that you leave him a voice mail if you are going to the ER, why, and how you're getting there--or if it was a life-threatening one, to have the ER notify his service and you're cool.). I have only see him cut off one person COLD TURKEY, and cal the pharmacy right then; and that woman was so high that she was lost finding the building, and called for directions from the lobby of the first floor....he's on the 2nd floor...jeez!!!)
But I digress, I will get on that message. Know my heart goes out to you and your hubby,
Blessings,
Jenna37
PS, and I am quite conscious 18 hours/day, and alert and oriented!!!
Thanks Sherry.
Yes, he changes his patch every 48 hours. His routine is to take off the old one, take his shower and wash, then have me put the new one on (I can get the air bubbles out better than he can) before he lies down for bed.
I will be 33 in October, though I will admit I still get carded anywhere I don't frequent, liquor stores, pubs, and such. My husband just turned 31 in July, and looks a good five years older. Most people think he wisked me away as a young-in rather than me, the Junior in High School that asked a Freshman to prom because I knew he wouldn't say no. We've been married for almost 9 years, together 16 years.
You'd think that many years would mean a lot to my husband, and in many ways it still does, but he has really changed over the years that we've been married. He's grown up in a lot of ways, we both have, but his illnesses (his central apnea first, then his head pain) have really brought out a different person. He is still the same guy I love, but with new characterstics I've never seen in him before. In highschool nothing ever bothered him, you couldn't really get him angry and he just lived like he didn't have a care in the world. He felt like he was going to go places. Now, as I'm sure it is easy to imagine, he's much more angry and bitter in most cases. He looses his temper easily and it can be hard to take him places like movies because the smallest thing can cause him to fly out, curse and yell, even with children around. He used to be the guy that everyone liked to be around and was always happy to hang out with you, no matter what color you were, if you were a geek or goth. Now he has become much less happy to be around and much more sarcastic. Our college friends are the most understanding of this, but we see them maybe three times a year, so it is easy to get excited about spending time together. Our local friends have all left except for one, who has issues of his own, so he is both understanding and yet angry himself. I've sat weekends listening to "Oh you think YOU have problems" for hours until one of them gets tired and conceeds. They can't possibly have a civil conversation to relate to one another or 'connect'. My attempts in that direction have been met with them both being angry with me.
The hardest part is with these changes, instead of reaching out to find other people to share with and understand, all my husband wants to do is bottle up and vent out to me. If he doesn't like what I have to say, he goes into a fit that I am so critical expecting too much of him, then breaks down that he has nothing else to go by. The doctor is not going to sit and listen to his worries and his feelings. He claims that all therapists and "doctor's of the mind" are worthless and not interested in helping him because they don't listen, they just try to pry out information that makes him feel even worse. I told him to join a forum like this one, he joined one where two weeks in the guy tried to sell him pills and threw it back at me with "see what happens?!" His "I've got to do this myslef" attitude is what got him into trouble to begin with. He self medicates instead of listening to his doctors and to me. He tells us all we don't understand and we are punishing and hurting him. It is pretty hard to hear, but I'm sure it is hard to listen to me saying what he is doing is wrong.
We'll continue to fight over his meds. I started in the begining holding on to the bottle, then I found him going through my dresser and any place I tried to keep it. So I kept the bottle on me and in my purse which he swore he'd never touch, then he'd sneak down at night and morning and go through my purse. So I put it under my pillow at night, so he started picking up the pills from the pharmacy (which I can't stop) and taking some out before handing them over. I bought THREE safes (all meant to, in his words, take the temptation out), he found ways to crack into all three. The first was a three dial combination, he sat there for three hours till he got the one that worked. The second one have six, he used a mirror to watch me open in, then when I changed the combination broke the safe itself. The third, I still don't know how he managed to break it open. I know at one point he picked the back up lock, but then I plugged up the key hole, and he still broke into it. What is worse is he doesn't tell me. At this point, I'm still fighting him, and watching over him while he makes his own choices, but I've told him I'm not taking blame for the consequences. When he begs me to help him through the withdraw, I can't help. His choices punish us both and I won't hold back. That has helped some what, but I'm under no illusion that he's just going to magically change.
Yes, he changes his patch every 48 hours. His routine is to take off the old one, take his shower and wash, then have me put the new one on (I can get the air bubbles out better than he can) before he lies down for bed.
I will be 33 in October, though I will admit I still get carded anywhere I don't frequent, liquor stores, pubs, and such. My husband just turned 31 in July, and looks a good five years older. Most people think he wisked me away as a young-in rather than me, the Junior in High School that asked a Freshman to prom because I knew he wouldn't say no. We've been married for almost 9 years, together 16 years.
You'd think that many years would mean a lot to my husband, and in many ways it still does, but he has really changed over the years that we've been married. He's grown up in a lot of ways, we both have, but his illnesses (his central apnea first, then his head pain) have really brought out a different person. He is still the same guy I love, but with new characterstics I've never seen in him before. In highschool nothing ever bothered him, you couldn't really get him angry and he just lived like he didn't have a care in the world. He felt like he was going to go places. Now, as I'm sure it is easy to imagine, he's much more angry and bitter in most cases. He looses his temper easily and it can be hard to take him places like movies because the smallest thing can cause him to fly out, curse and yell, even with children around. He used to be the guy that everyone liked to be around and was always happy to hang out with you, no matter what color you were, if you were a geek or goth. Now he has become much less happy to be around and much more sarcastic. Our college friends are the most understanding of this, but we see them maybe three times a year, so it is easy to get excited about spending time together. Our local friends have all left except for one, who has issues of his own, so he is both understanding and yet angry himself. I've sat weekends listening to "Oh you think YOU have problems" for hours until one of them gets tired and conceeds. They can't possibly have a civil conversation to relate to one another or 'connect'. My attempts in that direction have been met with them both being angry with me.
The hardest part is with these changes, instead of reaching out to find other people to share with and understand, all my husband wants to do is bottle up and vent out to me. If he doesn't like what I have to say, he goes into a fit that I am so critical expecting too much of him, then breaks down that he has nothing else to go by. The doctor is not going to sit and listen to his worries and his feelings. He claims that all therapists and "doctor's of the mind" are worthless and not interested in helping him because they don't listen, they just try to pry out information that makes him feel even worse. I told him to join a forum like this one, he joined one where two weeks in the guy tried to sell him pills and threw it back at me with "see what happens?!" His "I've got to do this myslef" attitude is what got him into trouble to begin with. He self medicates instead of listening to his doctors and to me. He tells us all we don't understand and we are punishing and hurting him. It is pretty hard to hear, but I'm sure it is hard to listen to me saying what he is doing is wrong.
We'll continue to fight over his meds. I started in the begining holding on to the bottle, then I found him going through my dresser and any place I tried to keep it. So I kept the bottle on me and in my purse which he swore he'd never touch, then he'd sneak down at night and morning and go through my purse. So I put it under my pillow at night, so he started picking up the pills from the pharmacy (which I can't stop) and taking some out before handing them over. I bought THREE safes (all meant to, in his words, take the temptation out), he found ways to crack into all three. The first was a three dial combination, he sat there for three hours till he got the one that worked. The second one have six, he used a mirror to watch me open in, then when I changed the combination broke the safe itself. The third, I still don't know how he managed to break it open. I know at one point he picked the back up lock, but then I plugged up the key hole, and he still broke into it. What is worse is he doesn't tell me. At this point, I'm still fighting him, and watching over him while he makes his own choices, but I've told him I'm not taking blame for the consequences. When he begs me to help him through the withdraw, I can't help. His choices punish us both and I won't hold back. That has helped some what, but I'm under no illusion that he's just going to magically change.
Hi Yidori,
Please don't apologize for not getting back and posting. You have had your hands full for sure. :(
The amount of medication your husband is on is incredibly high. I fully understand why his Doctor won't up his dosage anymore than he already has. He is taking 45 mg's of Oxycodone 4 times a day. That's a lot!!! Plus he is on 50 mcg Fentanyl Patch. Fentanyl is the strongest medication that we can get as Pain patients as I said in my earlier post. The most that he might do is raise the Patch some but I have a feeling that he won't. Is your Husband changing his patches every 48 hours or every 72 hours. If he is changing them every 72 hours he might be able to get his Doctor to give him a script for every 48 hours. That's what I have. My patches only work for 48 hours on me, also. This is not uncommon for people that use the patches. I've asked around and you'd be surprised how many people change their patches every 48 hours. My PM Doctor told me that most people that he treats don't have the patch last a full 72 hours.
You've mentioned several times about you and your husband's ages. Would you mind telling us how old you are? Sometimes this does make a difference when it comes to treating the patients. It shouldn't but it does quite often. :( The fact that you and your Husband are childless doesn't enter the equations at all.
You have a lot going on but you must police your husband's pills. He must not be allowed to take more than he is given every day. If he continues doing this he very well may wind up losing all of his PM (Pain Management) Doctor's and will not be allowed in the trial. You must get this through his head one way or the other!! It won't be easy but it is imperative that he understands this!!
I'll be looking for your other updates............Sherry :)
Please don't apologize for not getting back and posting. You have had your hands full for sure. :(
The amount of medication your husband is on is incredibly high. I fully understand why his Doctor won't up his dosage anymore than he already has. He is taking 45 mg's of Oxycodone 4 times a day. That's a lot!!! Plus he is on 50 mcg Fentanyl Patch. Fentanyl is the strongest medication that we can get as Pain patients as I said in my earlier post. The most that he might do is raise the Patch some but I have a feeling that he won't. Is your Husband changing his patches every 48 hours or every 72 hours. If he is changing them every 72 hours he might be able to get his Doctor to give him a script for every 48 hours. That's what I have. My patches only work for 48 hours on me, also. This is not uncommon for people that use the patches. I've asked around and you'd be surprised how many people change their patches every 48 hours. My PM Doctor told me that most people that he treats don't have the patch last a full 72 hours.
You've mentioned several times about you and your husband's ages. Would you mind telling us how old you are? Sometimes this does make a difference when it comes to treating the patients. It shouldn't but it does quite often. :( The fact that you and your Husband are childless doesn't enter the equations at all.
You have a lot going on but you must police your husband's pills. He must not be allowed to take more than he is given every day. If he continues doing this he very well may wind up losing all of his PM (Pain Management) Doctor's and will not be allowed in the trial. You must get this through his head one way or the other!! It won't be easy but it is imperative that he understands this!!
I'll be looking for your other updates............Sherry :)
Thanks Jenniferk86. Chiari malformation was one of the specifics that was looked into while my husband was with Jefferson Hospital. They had a specialist check out my husbands three sets of MRI and he ruled it as a negative. They felt it unlikely and also that his symptoms very closely fit the NDPH model.
Sherry, he is on 50mcg per hours is the dosage for my husbands patches. One typically lasts two days.
I'm sorry for the delay in replying. It has been some not so great two weeks. My husband spent one week in a therapy hospital after I found him with several bottles of various OTC pills he was threatening to take to kill himself. It was the one place that his insurance covered, but it wasn't very helpful. They are used to teens with drug addictions or alcoholics that fall of the wagon after rehab. They concluded his head pain was either made up or intensified in order to feed his pill addiction. His regular doctor got him out as soon as he could, but is unsure what to do now.
My husband quit his job not long after my last post and while he said he'd work two weeks, his boss told him to use his vacation and get out. They haven't gotten along too well. Part of his depression was not being employed and worried about that, but then a friend of his at another department heard he had quit and told him he still had a position open, paying well with the same benefits he would love to hire him for, so my husband took it.
The pain doctor didn't even call me back when I reported my husband was suicidal. The nurses told me to bring him to his appointment. That morning he started vomiting around 4 AM and had flu like symptoms. I called four times from when they opened at 8:30 until 15 minutes prior to his appointment at 1:45, they all just took messages and said the doctor was too busy and to show up on time. My husband sat in the waiting room for two hours, then the exam room for another two hours, all with no medication, no food, no liquids, trying not to get sick. I called out to the nurse after four hours when he started to pass out. She was going to get him water... and was no help. I had some Gatorade in the car, so I ran out to get a bottle figuring they would have ice or something... they wouldn't let me BACK IN to give it to him! The door is on a lock so someone has to either open it or have a pass to get to the back. The lady at the desk told me I couldn't go back because the doctor was with my husband. She went in the back to 'check on' my husband and told me to sit down, he should be done shortly. I told her to at LEAST give him the drink, he was probably dehydrated and weak, it had been so long and he was so sick all morning. She said "ok, I'll ask" and took it. She came back and said he didn't want it, but she left it in the exam room.
15 minutes later (while I'm pacing and ticking off the ladies who keep telling me to sit down) my husband comes staggering out and says "please just get me out of here." As we drove to the pharmacy he gulped down the Coke I had in the car, hot and all, don't know what happened to the Gatorade I'd given the lady... he never saw it. In fact he never saw ANYONE. The nurse came in and 'helped him to back on the bed' then said "ok your scripts will be ready shortly, the Doctor is just signing off of them" and left. four and half hours and they didn't even TALK to him. These people can't possibly care! and keeping me out and LYING to me that I can't go back because the doctor is there?! By the time we got to the pharmacy I was fuming. I bought another cold drink while we were waiting and gave it to my husband. With each sip he felt better and better, even a little hungry.
I don't know what we are going to do. I really want my husband to take part in the the implant study, but the Doctor seems to be totally oblivious to what goes on at his practice, or he doesn't care either. Our regular doctor is out on vacation for another week. We will ask for his advice, but I think he is a bit at a loss as well.
Since the medication has been the same, my husband decided to give the patch another go. He has had his pills for four days now and they don't do much anymore, but it is better than withdraw.
I desperately hope our situation is a rare one and that suffers with chronic pain are not treated like this routinely. I can't imagine how horrible it is to suffer and then be criminalized or treated like some sort of beggar that won't quit bugging people for help!
Sherry, he is on 50mcg per hours is the dosage for my husbands patches. One typically lasts two days.
I'm sorry for the delay in replying. It has been some not so great two weeks. My husband spent one week in a therapy hospital after I found him with several bottles of various OTC pills he was threatening to take to kill himself. It was the one place that his insurance covered, but it wasn't very helpful. They are used to teens with drug addictions or alcoholics that fall of the wagon after rehab. They concluded his head pain was either made up or intensified in order to feed his pill addiction. His regular doctor got him out as soon as he could, but is unsure what to do now.
My husband quit his job not long after my last post and while he said he'd work two weeks, his boss told him to use his vacation and get out. They haven't gotten along too well. Part of his depression was not being employed and worried about that, but then a friend of his at another department heard he had quit and told him he still had a position open, paying well with the same benefits he would love to hire him for, so my husband took it.
The pain doctor didn't even call me back when I reported my husband was suicidal. The nurses told me to bring him to his appointment. That morning he started vomiting around 4 AM and had flu like symptoms. I called four times from when they opened at 8:30 until 15 minutes prior to his appointment at 1:45, they all just took messages and said the doctor was too busy and to show up on time. My husband sat in the waiting room for two hours, then the exam room for another two hours, all with no medication, no food, no liquids, trying not to get sick. I called out to the nurse after four hours when he started to pass out. She was going to get him water... and was no help. I had some Gatorade in the car, so I ran out to get a bottle figuring they would have ice or something... they wouldn't let me BACK IN to give it to him! The door is on a lock so someone has to either open it or have a pass to get to the back. The lady at the desk told me I couldn't go back because the doctor was with my husband. She went in the back to 'check on' my husband and told me to sit down, he should be done shortly. I told her to at LEAST give him the drink, he was probably dehydrated and weak, it had been so long and he was so sick all morning. She said "ok, I'll ask" and took it. She came back and said he didn't want it, but she left it in the exam room.
15 minutes later (while I'm pacing and ticking off the ladies who keep telling me to sit down) my husband comes staggering out and says "please just get me out of here." As we drove to the pharmacy he gulped down the Coke I had in the car, hot and all, don't know what happened to the Gatorade I'd given the lady... he never saw it. In fact he never saw ANYONE. The nurse came in and 'helped him to back on the bed' then said "ok your scripts will be ready shortly, the Doctor is just signing off of them" and left. four and half hours and they didn't even TALK to him. These people can't possibly care! and keeping me out and LYING to me that I can't go back because the doctor is there?! By the time we got to the pharmacy I was fuming. I bought another cold drink while we were waiting and gave it to my husband. With each sip he felt better and better, even a little hungry.
I don't know what we are going to do. I really want my husband to take part in the the implant study, but the Doctor seems to be totally oblivious to what goes on at his practice, or he doesn't care either. Our regular doctor is out on vacation for another week. We will ask for his advice, but I think he is a bit at a loss as well.
Since the medication has been the same, my husband decided to give the patch another go. He has had his pills for four days now and they don't do much anymore, but it is better than withdraw.
I desperately hope our situation is a rare one and that suffers with chronic pain are not treated like this routinely. I can't imagine how horrible it is to suffer and then be criminalized or treated like some sort of beggar that won't quit bugging people for help!
I am not implying that you husband has this, but it is VERY common that Chiari malformation is missed on mri, it cannot be detected on cat scan or x ray and debhilitating chronic headache is the main and sometimes only symptom. I cannot help in any other advice as I am not experienced and I have Chiari that is why I am speaking here. It takes on average 6-10 years to diagnose and is very rare condition that little doctors know much about. Do you happen to have a copy of the films of the mri's for your husband? If the radiologist doesn't find it or doesnt look for it, they often do not report it and say the mri is normal. I have had severarl mri's come back normal and chiari is usually a congenital malformation, meaning from birth. They missed mine several times and mine was VERY significant.. it is possible that he could have it.. Do you have copies of the mri films?
I'm going to answer your post in length but first do you mind telling me how much Fentanyl he is on right now?
Thanks. :)
Thanks. :)
Thank You for your kind words Sherry. they mean so much.
My husband is on Oxicodone. The pills are 30 mg each and he (is supposed to) take 1.5 pills four time a day. He started at 10 mg 1 pill four times a day and quickly was upped to 10 mg 2 pills four times a day. That helped for nearly three months and we seem to have been spiraling down since then. They had taken him up to the 30 mg 1 pill four times a day when I had to come to his appointment and pour my heart out to tell them it wasn't working and was destroying our relationship and his work. He is still managing to work but only just. We just can't afford to live on my salary and benefits and disability is so hard to get without a condition that is recognized (NDPH is not, they think it is all in his head)
My husband has always been a light sleeper and he is awake most days at 5 AM and doesn't go down until 9-10 PM. Four times a day leaves a huge gap for him and he just isn't capable of taking it easy when his pills run out. He thinks he has to run himself into the ground and get everything done he used to do. Even after two years and my pleading he just can't slow down and the pills, constantly in his system seem to be the only way to keep up that pace. I've been able to get him to sleep early with night time medication, but then he is up at 3. his body doesn't know how to sleep in and as soon as he is awake and alert, the pain returns in full force. So they gave him an extra 2 pills each day to help with the longer time periods, but since the single pill wasn't cutting it at that time, adding the extra through the day didn't mean much. Within a month my husband was back to sneaking extra pills and meaning to 'make them up later' which just doesn't happen since the pain is relentless.
It is saddening yet warming to find someone who knows what phantom limb pain is like. Most people immediately think of migraines when I describe my husband's condition and ask about his diet and brain tumors and allergies... it isn't like that at all. When I say it is like PLP, people start to understand. No medication helps because in the body there really is Nothing Wrong to treat and make the pain stop. They can't find anything to tie this to my husband nor any of the other suffers, of which during our time with Jefferson Hospital, we met quite a few. If one day your leg started hurting and it never stopped, but yet there was nothing wrong with your leg, what would you think? You'd think you were crazy and so would most doctors. It is the same for my husband, but happens at the back of his head and radiates through his skull.
Our next appointment is next Monday and I hope to have a chance to see the head doctor. He sounds very nice (and has been working hard toward the implant for us) but as it can take four to five hours until he sees you, I don't always have the time off from work to stick around that long. I know my husband wants off the patch and says it is to blame for his pills not working, but he still holds on to hope that they will up his medication until December. I'm realistic and try to soften the blow that he might have to accept change, but right now I know it is hard for him to give up (as he sees it) on the one thing that has worked in the past. He knows I'm not totally in the dark. I have back problems of my own that come and go, and we had a miscarriage that left me with several problems. I get flare ups that I have to deal with and he helps me through them, without medication since they don't trust us with anything stronger than Naproxin and some muscle relaxors. Anywhere we go they see he has a pain contract and for some reason, maybe our age, maybe our childless lifestyle, who knows, they think I'm just there to get pills so they don't want to give them and I don't push the envelope unless I can take it right in front of them in the ER.
There are times I get so angry with him for breaking rules and not listening, but they never last. I can see how hard he tries and the few times he has tried to reach out, he has been taken advantage of or betrayed. People befriending him on-line just to try and sell pills, get a new client, Jefferson Hospital thinks he is just another addict that can't control his desire to get high and isn't strong enough to find a 'real answer' for the pain he suffers. I yanked him out of their hospital the last time he was there after their lead doctor down right abused his body with needles and drugs and then threw him away like a piece of trash when he told them sobbing that it just wasn't helping and he couldn't take the pain and confinement anymore. They said he didn't want their help and was throwing his life away to get drugs. I've never been a violent person, but I was so tempted during those ten days!
I read about pain suffers that are abandoned by family and loved ones, friends and coworkers on here. I've seen enough of it from our own families, but my husband and I have been together since high school. We have been through everything together since our teen years. It can be hard to look at him at times and see the man I married, but some where in there if I look, I still see him. He scared and upset fighting something harder than he has ever faced before, and that softens me. I tell him that as long as some shimmer of him is still there and still loves me, I'll be with him through this. I won't throw his life away no matter how long he begs as long as there is hope for a future, but I will always try to help him.
My husband is on Oxicodone. The pills are 30 mg each and he (is supposed to) take 1.5 pills four time a day. He started at 10 mg 1 pill four times a day and quickly was upped to 10 mg 2 pills four times a day. That helped for nearly three months and we seem to have been spiraling down since then. They had taken him up to the 30 mg 1 pill four times a day when I had to come to his appointment and pour my heart out to tell them it wasn't working and was destroying our relationship and his work. He is still managing to work but only just. We just can't afford to live on my salary and benefits and disability is so hard to get without a condition that is recognized (NDPH is not, they think it is all in his head)
My husband has always been a light sleeper and he is awake most days at 5 AM and doesn't go down until 9-10 PM. Four times a day leaves a huge gap for him and he just isn't capable of taking it easy when his pills run out. He thinks he has to run himself into the ground and get everything done he used to do. Even after two years and my pleading he just can't slow down and the pills, constantly in his system seem to be the only way to keep up that pace. I've been able to get him to sleep early with night time medication, but then he is up at 3. his body doesn't know how to sleep in and as soon as he is awake and alert, the pain returns in full force. So they gave him an extra 2 pills each day to help with the longer time periods, but since the single pill wasn't cutting it at that time, adding the extra through the day didn't mean much. Within a month my husband was back to sneaking extra pills and meaning to 'make them up later' which just doesn't happen since the pain is relentless.
It is saddening yet warming to find someone who knows what phantom limb pain is like. Most people immediately think of migraines when I describe my husband's condition and ask about his diet and brain tumors and allergies... it isn't like that at all. When I say it is like PLP, people start to understand. No medication helps because in the body there really is Nothing Wrong to treat and make the pain stop. They can't find anything to tie this to my husband nor any of the other suffers, of which during our time with Jefferson Hospital, we met quite a few. If one day your leg started hurting and it never stopped, but yet there was nothing wrong with your leg, what would you think? You'd think you were crazy and so would most doctors. It is the same for my husband, but happens at the back of his head and radiates through his skull.
Our next appointment is next Monday and I hope to have a chance to see the head doctor. He sounds very nice (and has been working hard toward the implant for us) but as it can take four to five hours until he sees you, I don't always have the time off from work to stick around that long. I know my husband wants off the patch and says it is to blame for his pills not working, but he still holds on to hope that they will up his medication until December. I'm realistic and try to soften the blow that he might have to accept change, but right now I know it is hard for him to give up (as he sees it) on the one thing that has worked in the past. He knows I'm not totally in the dark. I have back problems of my own that come and go, and we had a miscarriage that left me with several problems. I get flare ups that I have to deal with and he helps me through them, without medication since they don't trust us with anything stronger than Naproxin and some muscle relaxors. Anywhere we go they see he has a pain contract and for some reason, maybe our age, maybe our childless lifestyle, who knows, they think I'm just there to get pills so they don't want to give them and I don't push the envelope unless I can take it right in front of them in the ER.
There are times I get so angry with him for breaking rules and not listening, but they never last. I can see how hard he tries and the few times he has tried to reach out, he has been taken advantage of or betrayed. People befriending him on-line just to try and sell pills, get a new client, Jefferson Hospital thinks he is just another addict that can't control his desire to get high and isn't strong enough to find a 'real answer' for the pain he suffers. I yanked him out of their hospital the last time he was there after their lead doctor down right abused his body with needles and drugs and then threw him away like a piece of trash when he told them sobbing that it just wasn't helping and he couldn't take the pain and confinement anymore. They said he didn't want their help and was throwing his life away to get drugs. I've never been a violent person, but I was so tempted during those ten days!
I read about pain suffers that are abandoned by family and loved ones, friends and coworkers on here. I've seen enough of it from our own families, but my husband and I have been together since high school. We have been through everything together since our teen years. It can be hard to look at him at times and see the man I married, but some where in there if I look, I still see him. He scared and upset fighting something harder than he has ever faced before, and that softens me. I tell him that as long as some shimmer of him is still there and still loves me, I'll be with him through this. I won't throw his life away no matter how long he begs as long as there is hope for a future, but I will always try to help him.
Hi Yidori,
I'm so very sorry that your Hubby is having to go through all of this pain. I can't imagine anything more frightening than having a condition such as this is. I can sympathize with you as I had to watch my Wonderful Husband go through this except that he suffered with "Phantom Limb Pain" for over a year before he passed away at the age of 52 from complications of Diabetes. That was over 14 years ago. :( It's a terrible thing to have to watch your Husband suffer and feel totally hopeless in being able to help them at all!!
Would you please let me know what strength his Doctor has put him on with the Fentanyl Patches? Since you are new to the Fentanyl they start at 12 mcg's and go as high as 100 mcg's, with different strength's such as 25, 50, 75 and can be combined to make an infinite strength by combining them all together. Fro instance, I'm on 87 mcg's. I've been as high as 125 mcg's after my THR (Total Hip Replacement). I've known of people being on a combination as high as 200 mcg's before.
The Fenatnyl is the strongest Pain Med (as far as I know) that we can get without being on an IV Pain Medication. It is upwards of 80 times stronger than Morphine. With your Husband being on the
I have gone back and read all of your earlier posts since you first joined and you have been through so much with your Husband. I understand how frustrating it is when you can't help him and get him the help from the pain that he so desperately needs and deserves. I took care of my Husband for 16 years and was fortunate to have wonderful Doctor's beside him all of the way, with the exception of one and I made sure that he was out of my husband's life and quickly. I wasted "no time" in dismissing him. You have forged the way for your Husband and managed to find the type of Doctor's that he needs and deserves!! Your Husband is so fortunate to have you by his side and fighting his battles and "keeping his spirits up" so that he doesn't lose hope as he finds what will work and found his diagnosis so that he could find answers!! Kudos to you!!!!
You have never said what type of pill medication the 30 mg's, 1 1/2 pills four x a day is. Would you please share that with us? It would help in clarifying the reason that your Doctor won't increase it. Is is perhaps Oxcodone or Percocet? Something along that line?
You are such a very "strong" Lady and I hope that you will continue to keep us updated. We will always be there for You and Your Husband as he forges ahead on his journey to get the help that he is searching for and needs so desperately.
God Bless you.............Sherry :)
I'm so very sorry that your Hubby is having to go through all of this pain. I can't imagine anything more frightening than having a condition such as this is. I can sympathize with you as I had to watch my Wonderful Husband go through this except that he suffered with "Phantom Limb Pain" for over a year before he passed away at the age of 52 from complications of Diabetes. That was over 14 years ago. :( It's a terrible thing to have to watch your Husband suffer and feel totally hopeless in being able to help them at all!!
Would you please let me know what strength his Doctor has put him on with the Fentanyl Patches? Since you are new to the Fentanyl they start at 12 mcg's and go as high as 100 mcg's, with different strength's such as 25, 50, 75 and can be combined to make an infinite strength by combining them all together. Fro instance, I'm on 87 mcg's. I've been as high as 125 mcg's after my THR (Total Hip Replacement). I've known of people being on a combination as high as 200 mcg's before.
The Fenatnyl is the strongest Pain Med (as far as I know) that we can get without being on an IV Pain Medication. It is upwards of 80 times stronger than Morphine. With your Husband being on the
I have gone back and read all of your earlier posts since you first joined and you have been through so much with your Husband. I understand how frustrating it is when you can't help him and get him the help from the pain that he so desperately needs and deserves. I took care of my Husband for 16 years and was fortunate to have wonderful Doctor's beside him all of the way, with the exception of one and I made sure that he was out of my husband's life and quickly. I wasted "no time" in dismissing him. You have forged the way for your Husband and managed to find the type of Doctor's that he needs and deserves!! Your Husband is so fortunate to have you by his side and fighting his battles and "keeping his spirits up" so that he doesn't lose hope as he finds what will work and found his diagnosis so that he could find answers!! Kudos to you!!!!
You have never said what type of pill medication the 30 mg's, 1 1/2 pills four x a day is. Would you please share that with us? It would help in clarifying the reason that your Doctor won't increase it. Is is perhaps Oxcodone or Percocet? Something along that line?
You are such a very "strong" Lady and I hope that you will continue to keep us updated. We will always be there for You and Your Husband as he forges ahead on his journey to get the help that he is searching for and needs so desperately.
God Bless you.............Sherry :)
Hello. He's had MRI and cat scans, x-rays, blood work, chiropractic work up, all normal. He's had nerve blocks done that were not really successful. If they numb the back of his head the pain lessons substantially, but they don't have anything to inject him with that lasts longer that an hour or so. He had one nerve ablation and within two weeks (while everything hurt from the ablation itself) the healing was better, but the pain was back. I don't know about a non-implant stimulator. The PMP put him through three sets of various injections and electro treatments of types to rule them out before he would consider him for the implant trial. He told us the implant works differently and he thinks that he can dial it in to what my husband needs, but if cheaper insurance covered methods worked, we wouldn't have to go for the implant. They didn't work, so according to the PMP, the implant is our last resort. He won't talk about after the implant and what if it doesn't work, because he doesn't want my husband and I to think it won't work. He feels it is very important to keep up hope.
Has he been checked for chiari malformation? Has he been checked for occipital nueralgia? What about am occipital nerve block or nerve freezing, or there is a non implant nerve stimulator
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