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Avatar universal

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.
19 Responses
1448748 tn?1312959808
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
Avatar universal
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.
Avatar universal
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  :)
Avatar universal
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.
Avatar universal
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.  :)
1448748 tn?1312959808
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?
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