Dilaudid Pain Pump (Page 2)
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I would like to talk to anyone who has a pain pump with Dilaudid. My mother has a pain pump and I am worried she will be on it for the rest of her life. She has had the pump for many years and I feel it has affected her greatly. She had to have all her teeth pulled because they were rotting and she also has a problem with her tongue burning and red all the time. I am worried she will never get off the pain pump because she is addicted... she also falls asleep all the time even while you are talking to her. Thanks for any advice.
Teresa.

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Not a big mystery. The Tylenol is added because it helps with the pain more than oxycodone alone. It isn't the doctors who do this. It is the pharmaceutical labs. Percocet, norco, vicodin and several other pain meds have Tylenol added to them

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It won't attack your organs! You actually use a much smaller dose than you would orally and having a pump keeps the dilaudid from being metabolized by the liver and kidneys

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Hi,

My name is Mark. While I'm not a doctor I do know a lot about chronic nerve pain, I've suffered with it for 20+ years. I have had 3 major surgeries & dozens if smaller procedures to try & get relief, but I've gotten little to nine. Recently had a pump inserted into NY left buttock. The first med they tried from all the tests that failed is Prialt (Ziconotide). I had such severe side effects that at my last programming they had to decrease the Orialt by 50%, & they added Dilaudid, which failed in the bolus test, but meds act differently when they r given in track the really (direct into spinal canal. I tell u this so u can understand where I am coming from.

Let me reassure you that anyone that gas had to take opiates for an extended amount if time ends up with dentures, as soon as I can lie in the dental chair I an getting mine, U can't wait to be able to really eat. For the past 10+/- yes. I have eaten with 1 molar, yep, 1 on top & 2 on the bottom, so it's actually normal for your teeth to rot if you've had to take larger amount if narcotics for chronic pain. So don't feel bad. My dentist says there's absolutely nothing I could have dine to stop it from happening other than not taking my meds, if I did that I would have no life at all.

Now, concerning falling asleep, I would 1st ask your mom how she is sleeping at night. I rarely get more than an hour if sleep, as I am awake ALL night dye to the pain. When I fall asleep its not long til I move in my recliner (can't lay in a bed yet, no way!) Anyhow, if she is not getting enough rest at night, her body will become chronically fatigued as nine is, & you will find her falling asleep at any moment in the day. I usually will conk out for a nap after I eat something, or when my wife is speaking to me. It was pointed out, & I see some merit in it, that you fall asleep when you r peaceful & feeling secure. Do I fall asleep in my wife, not because I want to be rude, but because she makes me feel secure & at peace & my body HAS TO have rest, just like ur mom. Also, if not that, she could have been given a little too much if one of her meds. Ask her doc. About it & maybe they can change a med for another it slowly reduce the 1 most suspicous until the med is still effective but not knocking her out. Believe me, the very worst thing you can do is blame mom for taking to much medicine. My wife used to do that to me & it hurt me deeply. I was following my doctors orders & wasn't sleeping, so it really helped by her putting a guilt trip on me that also led to stress & even more non-rest. But, she is frustrated that nothing seems to work & she just wants her husband back, so I understand. Remember, chronic pain affects the whole family & also close friends, along with the person directly experiencing the pain.

Finally, the pump is the best way to deliver opiates to your mom. First, much smaller doses can be given thru the pump than can be given orally. Secondly, get over it. Your mom IS DEPENDENT on drugs to live. That is far different than a perfectly well person seeking out drugs to feel high, that's addiction. Your mom IS NOT AN ADDICT & don't ever tell her she is, 1st its not true & 2nd it only makes the pain worse. Hey, I know u r hurting too emotionally, but for your moms sake, get over it, & understand the HUGE difference between addiction & dependency. I've been taking opiates for 20+ years & yes, I am
Dependent on opiates to be able to have some kind if quality if life. Okay! The #1 thing you can do for mom is 1 LOVE HER NO MATTER WHAT! & tell her you do. 2. SUPPORT HER DECISIONS IN MANAGING HER PAIN. Go to her next appt. With her & ask the Dr. What can I do to help my mom have the quality of life she deserves. You'll be surprised at how mom responds to your unconditional love & support. For me these 2 things were a stronger medicine for my pain than anything the doctors were giving me.

I salute you for being concerned about your mom. I hope it helps you to know there are a lot of us out here just like your Mom & we are just doing our best to survive & try to live life to the fullest that we can. Sorry for the lengthiness, but I hope this helps. Oh, I go back in another week to get the Dilaudid they added turned up, while the Prialt will either stay put it be decreased more depending on my bodies reaction to this first cut if 50%. I'll be praying for you & mom! Oh yeah, I'm a pastor, with a masters in Psychology, & a doctorate in Theology. So I am a doctor, but not medical one, bur a spiritual.one!
God's Best To You & Mom, & BE WELL!

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I have found 5mg of hydromorophone seems to be average continuous dose. I am still in the dose adjustment period,I am at 0.6655 with a bolus dose of 0.0600/3hrs my pain is 25% better. I get a pump refill next month my dr said he was increasing the strength and adding some biclofen. My point is there are several ways to treat your pain thru the pump, so don't give up or continue suffering. Just communicate with your Dr otherwise it's your fault not the pumps.

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The ikTylenol put in with th pain meds is an agonist with the pain meds. In other words, the Tylenol increases the analgesic effect of the pain medication. The two meds together provide better pain relief.

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I have a pain pump with dilaudid 0.7999, on a continuous drip since 9/2014. My pump is a Medtronic II.
I find that even though I have had stomach probs for many years, my stomach hurts much worse, and because
my body can only tolerate less than 1 mg, I highly question if it helps at all.
Ihave had chronic insomnia for yrs., but never this bad. I believe the Dilaudid is the cause.


My pain management dr., who follows m1 has attempted to increase my dose several times, I have had.to ask him to decrease.the teeny dose I can barely tolerate. My pain is
9-10 all the time.
Many times I have wanted to have it removed, but he
swears he has seen marked improvement since he put it in.
I have been 85% bedbound for 16 yrs., with over 50 surgeries. It's her choice. Pumps can be removed. I had 2 Medtronic 1 pumps removed from my back due to problems.
Remember no matter what the dr. thinks, your mom will always know her body.
She has to tolerate the effects of how she feels 24/7.
Whether she decides to keep it is up to her. Do her side effects make her life better? Is the pump really helping at all?
Maybe she needs the dosage changed. Maybe the meds in her pump need to be changed.
Morphine was put in mine, even though it waas in my chaart prior to surgery that it made me deathly ill. Hence, the change to Dilaudid.
I'd ask if her physician if she just one, or several meds in her pump, and definitele be closely followed by and stay in pain management until all issues aare handled satisfactorily. And above all, drs., even the good ones, aren't aalqaays right.
For me, the true comfort I receive comes from God. And whenever I have done my best and still can't figure things out, I ask Him for His will be done. I'm almost 70 and He has answered every prayer I've ever prayed.
I will keep you in my prayers, and hope that, if only one word, some of this feedback will help you. May God bless you from this day forward. Be well.

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Maybe what is really needed is to re-evaluate your medications. May you need to change from dilaudid to a combination of other meds. I have had my pump for almost 10 years. It's from Medtronic & gets replaced every 7 yrs. my pump gets read every month when I go in for my appointment to make sure it's working properly & have enough medicine till the next appointment. My dr also gives me a printout of all the medication that is in the pump, the hourly & daily amount used, when the next fill date will be & also how long the pump will last & when it needs to replaced. With continuous monitoring, the pump is very efficient. Not to say that there are days where breakthrough pain happens & that's why I also have oral medication. I never had an issued with my teeth either. I see my dentist every 6 months & never has he said that any of the medication in my pump or I take orally has had an effect on my teeth.

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You have to have the pump replaced every 5 years. Unless you experience any problems such as mucosa or necrosis around the pump area under the skin. I have had mine for 2 2/2 years, a Medtronic and I was told that the pump will need to be replaced every 5 years.

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If you have an intrathecal pain pump then the pain medicine is going into the spinal fluid and by passes all other organs. Didn't your Dr explain it? I did a lot of research before I got mine.

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If you are on Dilaudid through a pain pump than you don't have to worry about it getting to any of your organs. The medication in a pump goes through a catheter into your spinal fluid. This is the main reason that the pain pump was created in order to prevent damage to kidneys, liver and any other organs. Your pain specialist doctor should have explained all of this to you even before you started the trial pump. Plus, you should have been given a video to watch along with all literature. I have had my pain pump made by Medtronic (most are) for 3 1/2 years and briefly began with fentanyl but switched to Dilaudid. I have bivipuvine as well. The Dilaudid is for my rheumatoid arthritis, osteoarthritis, degenerative arthritis and fibromyalgia and the bivipuvine is for my neuropathy nerve pain in my feet and hands.i would speak to your doctor for any concerns because usually, most people who have my kind of diseases never get off of the pain pump. It is permanent and so much safer than oral medication

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It depends on your dr. He can write it in a way where insurance should cover it. Talk to your dr. Since he prescribed it, he should be able to write it in the correct way. Whatever you do, DO NOT STOP THE MEDICINCE. You need to taper off

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I have a pain pump that has Dilaudid in it for many years. It does not the same as if you take the drug orally. Mine drips into T10-T11. It's used for chronic lower back pain. She is not feeling any effects from this. There must be something else she is taking to cause those symptoms. I have had my pump implanted over 9 years with no symptoms whatsoever. There is more going on. You need to find out what else she is taking.

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I have the pain pump. And I started with Dilaudid and now I'm on Fentanyl. I have had the pump for about 15 months but when they changed it to the Fentanyl. It seems to take most of the problems your talking about away. And my doctor said that I will have it the rest of my life. You have to decide if you would rather you mom be in pain or on the pump. I'm only 44 and have never even taken a aspirin but after I got deathly sick due to an illness and had surgery. I have chronic pain. I.would rather live addicted to a pain then live in pain constantly. That's what I think.

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I am new to the pain pump and the Dilaudid usage. I had it installed on 2/18/16 and as of 7/10/16 I am at 4.5 mg in a 24hr grace period. I was on 100mcg Fentanyl patches every48 hours not 72, and I am still on 15mg Oxycodone three times a day. They have been going slow with the pump since I have been having other health issues. I feel like the Dilaudid dosage is not enough. When I am hospitalized they give me 4 mg IV every 4 hours and it barely helps the pain when I am at my worse. I guess what I am asking is what is an average dosage per hour or daily of Dilaudid? I appreciate any and all advice!!!

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I have had a pain pump for about 8 years. There is 3 kinds of meds In it morphine, dilaudid and fentyryl but still in terrible pain. Wanted the pump taken out and the Dr said I am addicted now and couldn't survive the with drawls so what do I do? Now he has a new drug that is suppose to take all the pain away but I would be the 3rd pe son he has giving it to. So what do I do. Ant replies

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The coverage of pain via dilaudid in the pump is similar to IV but lasts much longer because the pump delivers the medication on a continuous basis and uses much less medication to cover the pain than IV. MY PUMP WAS initially filled with morphine but i opted for dilaudid instead because the side effects of morphine were too intense for me. I want to know how long the pumps last? I have a Codman 3000 since 2006. Do these pumps ever need to be replaced? Its been my God send to live as close a normal life as possible. It seems like it's not working right. Pump or catheter issue? I have permanent nerve damage in my c-spine nerve roots and make my arm and shoulder feel like it's being sawed off like the soldiers in the civil war days had to endure before anesthetic was invented.

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The choice is addiction or pain. I too have a pain pump and use Dilaudid in it. It's lower dose than than OxyContin and Oxycodone I was on and the pain is better controlled. If your Mom is old she normally would sleep a lot.
Pain or enough medication to control the pain? What would your choice be?

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You should do a living will and a regular will as soon as you can. You could be in a car accident on the way to work in the morning. God never garanteed anyone tomorrow. It will save your loved ones from all the fighting and stress of having to make decisions for you.

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My husband has had the pain pump since December 2011 and had to replace the first one because of complications one year later. He too has chronic pancreatitis and could not find any pain relief until the pain pump. December 2012 he had another implanted in a better area of his abdomen and has went from morpheme to a combination of dilaudid and the numbing medication that starts with B. I don't have his printout in front of me to tell u what the name of the medicine is. He has had some great no cream no Ola miles and it is other area and now seems to have relief, but he does show signs of falling asleep standing up falling asleep with coffee in his hand he constantly has problems falling asleep. He is afraid to inform his doctor because he does not want to be a decrease in his oral medication it is also helping with this pain. It's been a challenge to find a regimen of meds to help him. I encourage you to have a good pain management doctor as well as a GI dr that acknowledges the facts behind pancreatitis! A lot of nurses that don't have any experience with pancreatitis does NOT understand the dynamics of how bad it can be when the pain is NOT controlled. My husband spent 17 days in the hospital after his pain management decreased his oral meds even though his disease has worsened and his pain wasn't managed. I begged them not to do that and sure as I'm sitting here, they ignored us. He ended up in so much pain that he was begging for help the day I called 911! It was horrific! Please feel free to contact me {edited for privacy} if you need any advice. We've been to Cleveland Clinc, OSU Mecial, IUHealth and I can refer you to one of the best GI doctors in this area. Good luck And God Bless. Do the pain pump but make sure you do research as well. Look into a QOL (quality-of-life) representative to assist you as well. I've recently read online about how patients need a representative to observe the patients quality of life and to help them.

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I'm on my third pain pump. I'm currently on 5 milligrams of dilaudid a day but have decreased it from 10 milligrams a day. It was my choice to turn down the pump because I felt it had very negative side effects. I recently had reconstructive jaw and joint surgery and my tolerance was so high I had to be placed on methadone and dilaudid around the clock.
My surgery was performed in a different city from where I live so I had to use a pain management doctor from the hospital. They put me on so much pain medication in addition to my pump the doctor was shocked that I was still breathing without assistance. The terrible thing was my tolerance was so high they couldn't completely take care of my pain. Luckily I have face off all of my p.o medications. But my body is so out of whack from long-term narcotic use that any minor pain I have my body registers it as intense pain. I have also delt with many years of depression due to my central nervous system being suppress from the narcotics, at least in my opinion. I've had major problems with my teeth because I can't tell when there is pain in them. I suffer from bladder problems because of the medication. I've also learned new pain doctors don't use pain pumps unless it is an end of life situation. My deepest desire is to get off my pump completely, but unlike most of the posts I've seen it was my decision. I just can't live like this anymore. There have been so many advances when it comes to treating pain sense my pump was implanted 18 yrs ago. I now concentrate on meditation, yoga, exercise, acupuncture, strength training, and stretching. I will probably always have chronic pain problems but I'm more afraid of what I missing out on than being off the pain medications. I think everyone should make their own decisions when it comes to being on narcotics long term, but I feel there are other ways to deal with pain that doesn't include medication.

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