Narcotic/Opiate Withdrawal Help?

Pancreatitis
#1

Hi, all:

I was recently able to reduce the tons of Fentanyl I was needing every day to just a few doses and a lower patch dose (which is going down every two weeks)- but I basically went from up to 15+ doses in a day prn to barely get by to about 2-3 average. I’ve been told to go slower, but I just won’t take opiates if I don’t need them for pain.

Of course, this started me back into withdrawal, although not like when I went cold turkey off Methadone without medical help or when my doc at Hopkins just removed EVERYTHING from prns to patches to IV PCAs all at once and I literally fell out of my wheelchair four times and felt like I was going to lose it mentally and physically-- but luckily I knew what to expect and hung onto the bedrails and anything else I could to get through the worst of it. Then they realized I was in an AP flare on top of CP after a double sphicterotomy by ERCP and started it back up-- I discharged myself and then ended up on months of TPN, but back on the meds.

Anyway, for an unknown reason (maybe a combination of things?) I’m having less CP pain right now-- or in the ganglia or whatever it is that makes it so bad… and so I’m going way, way down on my meds, happily. I can only hope it will last, because I can’t imagine more years as it’s been. But with it, even knowing what to expect, and even going slower than before, I’m still having bad withdrawal episodes, most days a few times, often starting right from bed and going on and off through the day. I don’t want to take Clonidine again (hated it!) and so I’m using Ativan (1-2mg) to help with the agitation and tightening and fear parts… and if the pain kicks in too badly, I’m using one of my prn’s-- the Fentanyl “lollipops.” Luckily, it’s not more than I should take to keep reducing the dose most days, but it’s so horrible to go through-- and it’s so exhausting, like an all-out brawl that’s painful and takes something big from my whole body from my head to toes.

I read some weird stuff that also goes on with opiate withdrawal and wanted to pass on one of the links. I’m getting most of this stuff, but don’t know if there’s anything else to do (other than Clonodine and what I’m doing already). I know I’ll get through it at home, but don’t know how long it will take and it’s SO hard to go through, especially over and over again!

http://www.wipo.int/pctdb/en/wo.jsp?wo=&IA=WO&DISPLAY=DESC

Any experience with this out there?

Thanks and hugs and love to all!!! Miss you guys!

Lisa

#2

Lisa, I am so sorry to hear about all that you are going through. I have no personal experiences to recount or from which to draw regarding withdrawals. I just wanted you to know that you are in my thoughts.

#3

Hi Lisa, I am happy to hear at least your doing some what better, I know those withdraws are so bad, you just want to scream! I too talk to my doctor about getting off some of my stuff, and he didn’t feel I was ready, in other words he wants me to wait until I go to Omaha :frowning: I don’t know what all the medications are you were taking, but if you can get off slowly without a CP attack, that would do you a lot of good. Ok hon just wanted to let you know I am thinking of you, and praying that all will get even better as time goes on :slight_smile: My daughter and her boyfriend were here all day, it was a little much, but so nice to just relax and visit. She even did the dishes from dinner and made some cookies :slight_smile: Ok tell Dave Hi for me, and I am sending you lots and lots of HUGS, talk to ya soon

Barb :slight_smile:

#4

Dear Lisa,

((((((((((((((Lisa))))))))))), I am so sorry you are going through all this. I have been going through so many synchronocities lately, and your message here is one of them. My brother just told me his wife is on life support again. She has hep c, and she knows she gets pneumonia when she smokes in the cold air. That’s exactly what she did. She is also addicted to pain medications as she takes at least twenty-five of them a day. It is obvious she has a chemical imbalance in her brain due to all these pills. Who in her/his right mind would purposely try to get on life support to get the attention of her/his spouse? I urge you to take only what you need, but make sure you don’t let yourself suffer before taking something for your pain. The longer you wait the harder it is for the medication to work.

Love And Blessed Be,
Theresa

#5

O MY LISA , my heart goes out to you i must say that is a terrible place to be. i went through that 1 time as in severe withdrawals sometime back. i was on 5 diff medications and i decided to throw all them down the toilet ,i was adamant to stop. i was tired of taking so many meds and never having any true relief of symptoms. the withdrawals they say last a week i do not agree with that it took me 2 months to start to feel somewhat like myself again. i never understood addiction or withdrawal until i was going through it. i now know why so many drug addicted ppl are never able to get away from it because of the withdrawals. i do know that there are meds to help with the symptoms that withdrawals bring. maybe the doc would be kind enough to allow you this modern day help instead of you suffering. the pain, paranoid, sleeplessness, bowel changes and low energy can be all or in itself dangerous. i hope you are have a better day the yesterday lisa we are here for ya hun.

nancy

#6

Dear Lisa: I’m so sorry you are having to go through all of this, but I am glad that you are having less CP pain. Hang in there and know that I am thinking of you and praying that all goes well. You are so strong and such an inspiration to all of us. Take care of yourself. Ellen

#7

My dear friend Lisa,
I am so sorry you have to go through this. I wish you didn’t. I don’t have any suggestions for you(wish I did) but I do want to let you know I am here and thinking of you. I will pray for peace during this time of weaning. I am so glad you can reduce your meds. I’m sure it is good for our bodies to get this out of our systems. Praise God your pain is lessened. Please take care and remember that I am thinking of you and all my friends here.

Pain free days to you,
Keri

#8

Hi, all…

Saw my primary care at Hopkins today-- mostly okay, and he’s fine with how I’m treating the withdrawal symptoms. That was reassuring.

Unfortunately, he’s recommending I go under anesthesia again-- and soon-- for some exams to find out what’s causing some bleeding issues-- and to rule out types of cancer that can’t be screened for easily. Just when something seemed to be going better!!! Ugh!!!

I asked if it could wait, because I just don’t want to go through anymore right now… and he basically asked if I want to live or die (or something to that effect, indicating that it’s more urgent than I obviously thought). I’ll try to set it up tomorrow. I can explain more in private notes, but am shutting it all down for the night with the hope that you’re all doing okay and please know that you’re all in my thoughts every day.

All the best, with love and hugs,

Lisa (and Dave, who was right be my side all day! I know, he’s awesome!!)

#9

I’m so sorry to hear of even more things happening to you. I hope they find that their was nothing to worry about after all. I’m glad that you are able to start decreasing the amount of medications you are on. You will be in my prayers, let me know if there is anything I can do to help. I do know that withdrawals are not pleasant one bit, and hope that it ends soon for you.
Hugs, prayers, and good thoughts your way,
Lindia K.

#10

Lisa: I hope that the tests come out negative. You are dealing with so much right now. Take care and keep us posted. Ellen

#11

Hi Lisa,

I'm glad to hear that you are feeling well enough to reduce your meds, but you did say something that concerns me... Clonidine is a scary drug-I was on it for about 6 years for night sweats, and it ended up giving me rebound high blood pressure. My bp used to be about 80 over 60, and by the end of the six years, it had jumped to the 150 over 100 mark!

I finally took the initiative and had my meds changed when I went in and it was 218 over 120. My doctor was a jerk, didn't want to give me pain meds (this is pre-cp, just IBS and the back thing), and asked if the reason my blood pressure was high was because he didn't give me refills on time for the second month in a row! Never mind the withdrawals for 3 days each month, he did not address the hypertension other than the comment about me being upset (I told him I was pissed at him-I had already gotten my refills). Three days later I walked into a casino bathroom and observed what at first I took to be a drunk sliding down the wall, and then found out that she was sick. I tried to help as much as possible (which entailed calling 911 instead of hotel security) and stayed with her and her friend until the paramedics got there. I found out 4 days later that she had stroked out and died in front of me. The only problem she had was hypertension!

I changed doctors the next day, and got in immediately for a heart screening. I was then told that my problem was caused by the clonidine! I really missed them for a while, as they were the one drug that enabled me to get to sleep at night, but I would rather live than sleep... So please be careful about the clonidine, I know it has some good benefits, but it is not worth giving yourself an additional problem...

As to the withdrawals, the only advice I can give is to lower your doses slowly. I have had a little success at staving off the withdrawal symptoms by using the other narcotics I have. If my withdrawals are from high doses of oxycodone, I will take a soma in place of the next dose of oxy, and then wait a little longer to take the oxycodone. I used to use Xanax also, but it caused withdrawals from it much sooner than the oxy, and with a lot lower dose. I.e.; take one Xanax, have withdrawals the next day. Musical chairs with meds, go figure...

I wish you lots of luck and many comfortable days, thank you so much for the hugs you send my way. You seem to have incredible timing and send them just when I need them! Love and Hugs to all, Molly

#12

Hi Lisa!

I’m so sorry to hear that you are having problems weaning from all the medications that you’re on. My prayers are with you!! I think of you often and hope this is a turning point for the better for you, Lisa! At least you are feeling some relief from all the medications and pain etc; I’m so very, very, sorry that you have to go thru all this; If I could make it all better for you I assure you I would!! Keep hanging on to Hope, Faith and Remember that you are Loved Much here on Careplace~ Keep a Smile on you face and Hope in your Heart!! ~Truffles xxoo

#13

Lisa,

A few years ago, I was on about 18 medications of all sorts for all
sorts of things. I felt like all of my meals were the pills instead of
the food after a while! Finally, I was using my walker around the
house with my head bowed down and looking at the ground, I felt like I
was drooling out of the sides of my mouth and all sorts of crazy
feelings like I was in a nursing home on my last forgetful days of my
life. On that day, I went through all of my meds and detailed what
each one was for. Of the 18 meds I was on, I only retained 3 for
regular use! It seems that when we go in to see our doctors for
different things, we are given meds for each condition that we present
with. Also, they don’t seem to say to just finish this bottle or only
refill once or twice–so the meds just keep on getting refilled and
the number of meds just grows.

To all of you, I was lucky that I ended and continued the right drugs
on my own. However, should you have a lot of different meds around the
house that you are taking and have taken for more than 6 months, take
them ALL to your doctor on your next visit and have the doctor tell
you which to stop, what levels that need to be changed, and which ones
to continue.

Love to you Lisa as well as everyone here,

Anyse

#14

Hey–

I hate to write more on this (I know, I’m not supposed to say I’m sorry for needing help, too), but I’m really scared and worried and hurting very much right now. It feels like my whole body and mind are going crazy and I’m controlling it but it’s exhausting me terribly. I almost can’t stand it and today and yesterday have been all day withdrawal symptoms with little relief. Before this it was only a few bad episodes a day. I don’t know what’s changed or what’s going on but and my doc never called back today. I don’t what else to do but I know I can’t go too many days like this. It’s horrible and wipes me out and makes my whole body go crazy and tight and agitated and I won’t even start with what goes through my head-- although fortunately I’m way too self-controlled to act on anything that might not seem okay to others. It’s a personal problem, but sometimes is a good one, I guess. I hate this almost as much as the CP itself. Now I get both… luckily I guess more right now is the withdrawal pain and stuff, if that’s even a good thing. I know most people do this in hospitals, clinics, with supervision, etc. I’m insistent to get through it at home and won’t try most of the drugs that would help the symptoms. It’s a catch-22 I guess, too. I’ve been crying a lot to get through it, hiding under blankets (like no one can find me there-- LOL!), and trying to stay tightly wrapped mentally so I don’t unravel and tightly wrapped physically so my whole body won’t wack out. It’s so hard to do this and go through it and I’m so scared and know it won’t last forever, but for now it’s so, so hard to go through.

Thanks for all the love and caring and notes and hugs-- I promise I’ll be up to writing back soon. The Fairies from my site are on the way if you ordered one-- and the others should be shortly behind. The new site will also be there in about a week-- I’ll let you all know.

Thanks again-- You’re all very special and important to me. Without this site and wonderful group of people this all would be so much more impossible to even survive.

Take care, everyone… Sending hugs and love your way, too!!

Lisa

#15

lisa

geez hun i feel ur fear and instability right now went through same thing some time back. i would not wish withdrawal on anyone its agonizing but so liberating in the end. hun please if it gets too hard call the doc as they told me it can be dangerous to do this on your on the body goes through shock and all sorts of things can happen. i wish i could be more help. reading your post made me cringe with the memory of that awful experience . your courageous to be taking this as you are and strong with determination is admirable. please stay safe and i pray that the ill affects of the withdrawal leaves you soon. your friend in the south.

nancy

#16

Hey, Nancy–

Back to tears again. Only ate some lo-fat ice cream, a popsicle and a banana today. Just feeling nausea on top of having walking instability and everything else I described. I went through this twice before: The first time taking myelef cold turkey off Methodone when the doc wouldn’t help-- and the only one who offered also admitted to trying to overdose me by telling me to take 100 mg of Ambien at once to sleep–forever. What a sick doctor he was. I may still report him. I barely got through it and was as close to killing myself and giving up and thinking I was a worthless piece of sh*t, etc.-- I’m so very fortunate and much stronger for having survived it all, but it still scares me having been so close to ending it all. I sure understand it’s just the drugs making me feel and think differently and I will NEVER, EVER go there again-- My life is great, despite all the illness and fights, and I will live forever! The second time my doc at Hopkins did it to me, while in an acute flare with my amylase/lipase climbing over 3000, vomiting, and in so much pain… but he felt that he needed to drop off my prns, my patches, and my PCA IV all at once, leaving me only with oral Ativan and Clonidine. It was horrible and nearly as bad as the first time, but I had more knowledge and forethought and discharged myself and readmitted to another hospital where they treated the pain and got me on home TPN for a few months.

Either way, this is somewhat easier, because I’ve been there before, and also because my pain doc is reducing the patch slowly-- but the large drop in the lollipops going from some days over 15 per day to only a couple has reeked havoc on my little body. It’s still craziness and impossible to really describe to anyone who hasn’t had the experience. I know people who care really try, but it’s just too hard to really ‘get.’ It’s terror like a bad nightmare but all day and all night and every minute.

Thanks for your words… I needed them right now. I wish I could connect/chat with you right now. I think I’ll turn things back off for a while. Need to try to rest and get cuddled hard by Dave and lay on the heating pad and just cry when I need to. I know I’ll get through and over it and hopefully never have to face it again-- I just can’t wait for it to calm down and let me chill out!

You’re awesome-- as has been everyone. Thanks so much!!!

Love and hugs to all,

Lisa

#17

lisa

hun if you have access to msn please messenger me id talk all nite with ya if u need. nancyoct211990@msn.com my name same for messenger. hang on hun. im here.

nancy

#18

Hi Lisa there is no reason for you to have to say your sorry! We all can relate to the pain and suffering your going through. We might not all have the same symptoms, but we sure know all about the pain!!! I also wanted to add to this post that I will not be responding for a few days as my mother is in Radiation treatment and tomorrow is a week down yeah! She is feeling the effects of it already, so I will be spending some time at her house. Yes resting too. I am sending everyone Big Hugs and Prayers that our Angles watch over us during these Hard Times…Durga I miss you so very much on here, you must be so weak :frowning: I hope things start looking up soon, and we see you on Care Place real soon…Lisa be strong and thou too shall pass! Miss You…Oh I won’t be calling this week hopefully next week ok…If you need to talk please please call I will be home in the mornings 7-9am so don’t hesitate ok…With All My Love, Barb :slight_smile:

#19

Hey, like, uh . . . wowsers!

Looks like everyone is going to heck! Durga with the pain and Lisa
with drug withdrawal! I really don’t know what to say except that we
all have to actually take better care of ourselves because I still
have this “feeling” about Kaiser running 'round my brain. They did all
of the tests that they could and I feel that it will be more the
problem of translating it all into something or other. I can see them
wanting to shlep me over to the shrinks and blame it on my brain
because I can actually do quite well for a few days (toward the end of
and a few days after a hospital stay). Now, I just don’t quite “feel"
right. I can’t put my finger on it or anything like that. It’s just
"there” or “out there” sort of likein Jean Paul Sartre’s book
"Nausea." It is EVERYWHERE and, as such, inescapable!

Love you all. Hang in there.

Anyse

#20

I was on Fentnyl patches for about a year and my MD changed my medication because my insurance refused to pay for the patches. It took me two months of feeling severe flu-like symptoms to change. Anytime they talk about “just switching to see if this works better” I remind them of this. People not affected by chronic disease don’t realize that pain isn’t the only thing patients have to deal with. God Bless you and Yours. Pam