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Help...about to do final withdrawal from Fentantyl
Hi everyone,
I had major back surgery on January 3rd and when I came to I was in excruitiating pain. The doctors could not get me stabalized for days and ended up putting me on 200 mcg/h Fentanyl patches every 72 hours. Due to post op complications (pneumonia, blood transfusions) I was in the hospital for 2 weeks. When I was released and saw my doctors for the first time to get the staples removed from surgery, they tried to take me off the patch cold turkey. I had a grand mal seizure and they put me back on it. So I've been doing a slow (so it seems) taper for the last 3 months and while that has been absolute agony...now I'm stepping completely off of it (I'm on 25 mcg/h) starting tomorrow and I'm scared.
Through the last three months I've had nausea, vomiting, diahrea, tics, hallucinations, migraines, chills, sweats...you name it, I've had it. What will I expect going completely off of it? My doctor was less than helpful and just said "we'll see" when I asked him (yes, he's a bit of a jerk). Will I have more of the same? Will it be worse? Last longer? I'm scared from everything I've read...
I never felt a "high" from taking it and instead have been sick from the start. I just want this over with. But I'm so scared about this. I'm just so sick of withdrawal pain and I just need some encouragement I guess. And after this I NEVER EVER want to hear "Let's prescribe you some pain medications..." AGAIN. I never took any before the surgery -- I had the surgery to avoid that and because I had absolutely no choice --- the longer we waiting the more permanent the paralysis would be.
Any advise? Am I overly worried that this will be worst than any of the withdrawals I've felt stepping down from higher to lower dosages?
I had major back surgery on January 3rd and when I came to I was in excruitiating pain. The doctors could not get me stabalized for days and ended up putting me on 200 mcg/h Fentanyl patches every 72 hours. Due to post op complications (pneumonia, blood transfusions) I was in the hospital for 2 weeks. When I was released and saw my doctors for the first time to get the staples removed from surgery, they tried to take me off the patch cold turkey. I had a grand mal seizure and they put me back on it. So I've been doing a slow (so it seems) taper for the last 3 months and while that has been absolute agony...now I'm stepping completely off of it (I'm on 25 mcg/h) starting tomorrow and I'm scared.
Through the last three months I've had nausea, vomiting, diahrea, tics, hallucinations, migraines, chills, sweats...you name it, I've had it. What will I expect going completely off of it? My doctor was less than helpful and just said "we'll see" when I asked him (yes, he's a bit of a jerk). Will I have more of the same? Will it be worse? Last longer? I'm scared from everything I've read...
I never felt a "high" from taking it and instead have been sick from the start. I just want this over with. But I'm so scared about this. I'm just so sick of withdrawal pain and I just need some encouragement I guess. And after this I NEVER EVER want to hear "Let's prescribe you some pain medications..." AGAIN. I never took any before the surgery -- I had the surgery to avoid that and because I had absolutely no choice --- the longer we waiting the more permanent the paralysis would be.
Any advise? Am I overly worried that this will be worst than any of the withdrawals I've felt stepping down from higher to lower dosages?
Thanks *hugs* -- this has been quite an eye opener for sure. I've never been addicted to anything before so I didn't know WHAT was going on -- seizures, pneumonia, a constant state of having the worst flu ever (I know I'm not psychologically addicted but the fentanyl worked so fast that my body certainly got addicted). The thing is? It NEVER made me feel good. Yes, it took away the pain immediately post op but that dosage could have killed me -- and it nearly did! The pneumonia and the grand mal seizure were not good signs. Now I just feel so tired and exhausted. I can't even remember the surgery in January. My brain is completely wreaked still and I'm hoping I didn't just have a chemical lobotomy thanks to the Fentanyl experience. I was a university professor this time last year. Then my back fell apart from degenerative disc disease that they uncovered when trying to figure out why three of my lumbar discs had turned to dust. I had to take a leave of absence. Then my husband got a better position in another state and I went with him since it was in the city that I was seeing the doctors in anyway and it was clear that I could not work until getting the back surgery -- I was already no longer walking because my nerves were crushed and I'd lost feeling in my legs.
Now? Four months after the surgery entirely spent withdrawing from fentanyl...I'm wondering when exactly my brain will return. I can still write at least -- it's good enough to make my points. But everything that comes out of my mouth sounds like a series of insane, paranoid, grunt-like semi-statements and I get so frustrated not being able to say things the way they are in my mind. My friends are urging me to sue. I've already ordered my post-op records to see what they tried before putting me on a super high dose (200 mcg) of fentanyl despite the fact that there's a black box warning that reads "do NOT give to post op patients."
This is nasty stuff. I know it probably helps people who have nothing else to try and are dying from the most painful conditions. But why did someone decide to put me on it? I now feel like I'm just pulling myself out of the wreckage of a huge car crash. It never made me feel good -- it took the pain away but at the cost of making me vomit constantly and pass out from vertigo. It put me into a complete stupor and I wanted off of it from the very start...only to find out after being on it for two weeks that I was stuck with it until we could get the dose low enough for me to safely step off of it, mostly due to continued hospitalization from seizures, pneumonia, and a severely weakened immune system due to needing a post op blood transfusion. Ugh.
So I got a rotten deal but wow have I learned a lot...
Good luck to you as well!!
Now? Four months after the surgery entirely spent withdrawing from fentanyl...I'm wondering when exactly my brain will return. I can still write at least -- it's good enough to make my points. But everything that comes out of my mouth sounds like a series of insane, paranoid, grunt-like semi-statements and I get so frustrated not being able to say things the way they are in my mind. My friends are urging me to sue. I've already ordered my post-op records to see what they tried before putting me on a super high dose (200 mcg) of fentanyl despite the fact that there's a black box warning that reads "do NOT give to post op patients."
This is nasty stuff. I know it probably helps people who have nothing else to try and are dying from the most painful conditions. But why did someone decide to put me on it? I now feel like I'm just pulling myself out of the wreckage of a huge car crash. It never made me feel good -- it took the pain away but at the cost of making me vomit constantly and pass out from vertigo. It put me into a complete stupor and I wanted off of it from the very start...only to find out after being on it for two weeks that I was stuck with it until we could get the dose low enough for me to safely step off of it, mostly due to continued hospitalization from seizures, pneumonia, and a severely weakened immune system due to needing a post op blood transfusion. Ugh.
So I got a rotten deal but wow have I learned a lot...
Good luck to you as well!!
Hey there.....just read this WHOLE thread.....what a deal?????
So happy you have made it 10 whole days off the F.Patch...and have some
percs to further wean the opiates out of your system.
You sound like you are doing GREAT.......and now, like you said you can wean off the perc and be done with opiates for GOOD!! YAY YOU!!!
You're a trooper......thanks for coming back and letting us all know how you are. I'm really glad you aren't going to use anything else now and just wean off the percs......
Blessings abound for you~
So happy you have made it 10 whole days off the F.Patch...and have some
percs to further wean the opiates out of your system.
You sound like you are doing GREAT.......and now, like you said you can wean off the perc and be done with opiates for GOOD!! YAY YOU!!!
You're a trooper......thanks for coming back and letting us all know how you are. I'm really glad you aren't going to use anything else now and just wean off the percs......
Blessings abound for you~
Well I've made it to 10 days off the patch. The doctor had me move down to percocet for a few weeks because I was so exhausted from the 3 month taper from that awful fentanyl that I couldn't handle the crash down to absolutely nothing. So we're using some percocet and in a few weeks I will finally be 100% drug free again soon!
as i understand it, there is one kind of patch that apparently doesn't look like the others. all mine have been pouches of gel so cutting into them would release the entire amount = so three days worth of fentanyl all at once. i guess that the other type of patch must be like my hormone replacement therapy patch is -- the medicine is woven into the patch and there is not "pouch" -- it's a true patch filled with medicine that you could cut in half without just having all the medicine dump out. i don't know where you get those patches from because the two manufacturers i've had the patches from the patches were both gel packs.
I have saw people do that also but it's really dangerous. It can allow all the fentanyl to go into your system at one time and they can overdose on it. I would not recommend to even attempting it. What I would suggest is covering half the patch with plastic wrap and then your only wearing half the patch. This way your not risking a overdose and death.
Wow...I would be complaining to someone for stopping you like that. That's so dangerous!! I seen someone cut there patch to taper.. Not sure if that is allowed to say but that's what I would do. This is hard but back surgery sounds pretty intense too. Praying for you during this
I was on 50mcg for 3 years. I had to be off the fentanyl for 24 hours before I could start the subs it was pure hell. Cindy is amazing she did wonderful cold turkey. She will be a wonderful support for you if you continue with the cold turkey. The suboxone does help with the withdrawals symptoms. It takes them away but when you wean off the subs you will have withdrawals. They won't be anywhere as bad as the fentanyl but they still are not fun and uncomfortable. If you go the suboxone route let me know. I'm willing to help anyway that I can. I'm currently weaning off the subs and feeling w/d symptoms. Good luck with whatever you decide. Let me know how your doing.
hope -- how long were you on the fentanyl for? my doctor hasn't offered any alternatives yet like suboxone. right now we're just seeing if i can survive this first attempt!
hi cindy -- thanks for coming over and thanks, hope, for bringing her over. :) yeah, this is my 7th surgery in about a four year time but this was the first on my back. so i've been on pain meds before and tapered off and such. but i just cannot understand the rationale behind giving me these patches while i was in the hospital. i don't know...it is the first surgery i've ever had without a pain pump. so i guess they found the dose that took away the post op pain the quickest so that they could get me out of the hospital the fastest. so i am confused as to what the rationale was behind robbing me of the last few months (i don't even REMEMBER most of january and february but i sure remember march when the distances between the amount of the painkiller increased and the worst of the symptoms started). i keep waiting for the back pain to come back...i've been tapering off this psychotic drug and i'm not even in pain? they can't go faster because of the seizure (I was at 200 every 72 hours).
wow...your story is amazing. i cannot even begin to imagine being on this for years...my body wouldn't let it go after two weeks and it was risk more seizures of go off of this really slowly. this stuff has made me feel like my brain has been complete mush and i feel like it has completely wiped me out and i'm glad this stuff is coming out of me because i'm so scared of any permanent damage it may have done!
i asked my primary about the clonadine and he said he didn't feel like it would be safe for me to take because my normal blood pressure is100/60 and it's been even lower during this whole fentanyl thing. he gave me muscle relaxers -- zanaflex? it seems to be working for the twitches and at least the weather is supposed to get out of the 90s and back into the 60s, which i think will help with the hot sweats.
the idea of taking a hot bath right now? i feel like i'm already in one -- my hair is soaking wet from sweat. so i'm wondering if that's just something weird about me (my temp tends to run hot). an ice bath is all i can dream of. maybe i have a cold for real under all of this? who can know...it doesn't seem like any doctor in the universe with take any symptom seriously while you are detoxing -- you just get "that's just the withdrawal, i'm not going examine you/take blood/run a test/whatever.
did you feel the exhaustion? i feel like i have been through the worst accident and run back to back marathons. i just can't put into words...it just feels like i will never get the energy back.
i'm glad i found this forum online. it's finally a place where i can read up on a lot of things and meet others that have been through this or are going through this.
wow...your story is amazing. i cannot even begin to imagine being on this for years...my body wouldn't let it go after two weeks and it was risk more seizures of go off of this really slowly. this stuff has made me feel like my brain has been complete mush and i feel like it has completely wiped me out and i'm glad this stuff is coming out of me because i'm so scared of any permanent damage it may have done!
i asked my primary about the clonadine and he said he didn't feel like it would be safe for me to take because my normal blood pressure is100/60 and it's been even lower during this whole fentanyl thing. he gave me muscle relaxers -- zanaflex? it seems to be working for the twitches and at least the weather is supposed to get out of the 90s and back into the 60s, which i think will help with the hot sweats.
the idea of taking a hot bath right now? i feel like i'm already in one -- my hair is soaking wet from sweat. so i'm wondering if that's just something weird about me (my temp tends to run hot). an ice bath is all i can dream of. maybe i have a cold for real under all of this? who can know...it doesn't seem like any doctor in the universe with take any symptom seriously while you are detoxing -- you just get "that's just the withdrawal, i'm not going examine you/take blood/run a test/whatever.
did you feel the exhaustion? i feel like i have been through the worst accident and run back to back marathons. i just can't put into words...it just feels like i will never get the energy back.
i'm glad i found this forum online. it's finally a place where i can read up on a lot of things and meet others that have been through this or are going through this.
Hey there!
Hope told me about your situation. I've been there too. Today, I'm 19 days clean off that awful drug! No going back for me. I'm sorry about your surgery, I've had 3, seems they make you worse, huh?
Anyway, I had been on the 100 every 72 hrs for 4 years then asked my dr to wean me off. After totaling 2 cars by falling asleep at the wheel, I wasnt liking the person I had become. She put me on the 75 mcg hr every 48 hrs and my pain seemed intense...for a year. I couldn't go any lower. Then 2 days before my next appt, her office called n told me she was fired. I only had enough meds to do for a few days. I was scared to death!! They didn't refer me out, just, "I'm sorry."
I found a regular dr and told him what was going on, I was wearing my last patch, had 2 Percocet to my name and he put me on Clonidine. Its a blood pressure med but really helps with wd. He also put me on Remeron to sleep. The first 7 days were the worst, intensified pain, jerking legs at night, but on day 8....I felt like I had been re-born! It was amazing. All the wd was over, the fog was lifted, now I can actually drive my car without fear of dozing off.
Drs don't care as much as you would love for them to. They herd us in like cattle and back out to the pasture as fast as they can. Please mention the Clonidine to him and follow the Thomas recipe. Take as many Epson salt baths as you can, its not only relaxing, but helps gets toxins outta the body.
I'm here for you!!
Good luck,
Cindy
Hope told me about your situation. I've been there too. Today, I'm 19 days clean off that awful drug! No going back for me. I'm sorry about your surgery, I've had 3, seems they make you worse, huh?
Anyway, I had been on the 100 every 72 hrs for 4 years then asked my dr to wean me off. After totaling 2 cars by falling asleep at the wheel, I wasnt liking the person I had become. She put me on the 75 mcg hr every 48 hrs and my pain seemed intense...for a year. I couldn't go any lower. Then 2 days before my next appt, her office called n told me she was fired. I only had enough meds to do for a few days. I was scared to death!! They didn't refer me out, just, "I'm sorry."
I found a regular dr and told him what was going on, I was wearing my last patch, had 2 Percocet to my name and he put me on Clonidine. Its a blood pressure med but really helps with wd. He also put me on Remeron to sleep. The first 7 days were the worst, intensified pain, jerking legs at night, but on day 8....I felt like I had been re-born! It was amazing. All the wd was over, the fog was lifted, now I can actually drive my car without fear of dozing off.
Drs don't care as much as you would love for them to. They herd us in like cattle and back out to the pasture as fast as they can. Please mention the Clonidine to him and follow the Thomas recipe. Take as many Epson salt baths as you can, its not only relaxing, but helps gets toxins outta the body.
I'm here for you!!
Good luck,
Cindy
I feel for you hun. I have been off fentanyl for over a month it is really hard. Try as best as you can to keep the anxiety down. I know it's easier said than done. I was also dependent and not addicted. I couldn't do it by tapering or cold turkey. So I ended up using suboxone to get off of the fentanyl. Now I am tapering off the subs. There is someone on here that is 2 weeks out from stopping fentanyl cold turkey I will message get for you. Hang in there feel free to message me anytime I will do what I can to help you. Hugs
Thank you *hugs* I'm just scared about what could be lurking around the corner symptoms wise. Right now I just mainly have a headache and major diahhrea at this step off but I'm scared I'm going to wake up in the middle of the night in the middle of hellish combo of what I've already experienced in the step downs from 200 mcg to 25 mcg and now to none. If I could just calm down it would be a lot easier I think...
You are in my thoughts...I am praying for you and sending all the positive energy I have...:)
at this point i'm just in the middle of it all. my surgeon was the one who referred me to this guy but i'll be sure to mention my disgust with this doctor. i mean i have tried to see things from his point of view, seeing a lot of people who abuse, etc. but then i remember that all i've been trying to do since getting on this is getting off this!!
i agree that some of these doctors could do with some "enlightening" experiences by having some patches stuck on them and then they can laugh and laugh at how fun this withdrawal is -- like they do now! i swear...the place I go to is like "oh girl you haven't seen ANYTHING YET -- wait until the final step off."
my eyes have certainly been opened to how the prescription drug and detox process works in this country...geez...
i have some immodium now and it's helping some i think. so far my biggest challenge has been the psychological things -- thinking badly of myself, thinking this is my fault, and hallucinations of things that sometimes kind of crack me up to be honest. :P finding the humor through suffering is all you can do sometimes...
and don't worry...i'm keeping very good notes...there will be a complaint or ten issued on this guy. i'm a doctor too...just not the kind that can prescribe things...but i can write...oh yes, i can write! ;)
i agree that some of these doctors could do with some "enlightening" experiences by having some patches stuck on them and then they can laugh and laugh at how fun this withdrawal is -- like they do now! i swear...the place I go to is like "oh girl you haven't seen ANYTHING YET -- wait until the final step off."
my eyes have certainly been opened to how the prescription drug and detox process works in this country...geez...
i have some immodium now and it's helping some i think. so far my biggest challenge has been the psychological things -- thinking badly of myself, thinking this is my fault, and hallucinations of things that sometimes kind of crack me up to be honest. :P finding the humor through suffering is all you can do sometimes...
and don't worry...i'm keeping very good notes...there will be a complaint or ten issued on this guy. i'm a doctor too...just not the kind that can prescribe things...but i can write...oh yes, i can write! ;)
You need to find a new doctor. Could your surgeon help taper you down? If your husband has a stronger personality than you maybe he could call the doctor and say you need a slower taper. And you are not addicted, you are dependent and there's a big difference. If you go to the er and they give you a script to taper, you can get it filled. You just wouldn't be able to get anything prescribed from your doctor because you'll have broken the contract. Buy it doesn't seem like he'll be writing even a taper script. This makes me so angry. Your doctor should be put on what he put you on and then be taken off them abruptly and see how it feels. Drink lots of fluids. Check out the Thomas recipe and pick up the supplements as they do help. Read up on Imodium and witjdrawal. It helps way more than you can imagine. I'd like to run your doctor out of time. He is violatimg the Hippocratic Oath to do no harm.
yes...my doctor is a really big jerk actually. He was someone that my surgeons referred me to and he's not only a jerk but it's a very depressing place to go to. It's combined with a methadone clinic and so basically they see everyone from those that need continual pain meds to those who are having trouble tapering to those who have abused the meds and taken too much. the patients are all nice -- but the STAFF...ugh...part of me thinks that my desire to get through this as soon as possible is to never have to deal with that place again!!
my doctor wouldn't even give me the 12.5 patch to taper onto -- said that it was "useless" and only "put off" what i'll need to face anyway. my husband doesn't like him at all...there have been times when i've said "thank goodness the doctor seems to be patient with me" and he's like "he called you an addict and said that he didn't think you had a good outlook as far as being able to stay off drugs -- you've never been ON then until post-op! and you have been in withdrawal most of the time because your body is just very sensitive to the drug!"
sigh. so i am just going to hope that i can handle this...i had to sign something in ny state that said that i can only get meds from the same drugstore (of my convenience), i have to do observed urine tests, and i cannot get prescriptions for anything controlled without his permission -- so if something happens and i'm at the er or something they won't help me. i just hate having to call him for anything -- for my stomach...anything! are all pain management/detox doctors this way or did i just find the rudest, meanest one i could find?
my doctor wouldn't even give me the 12.5 patch to taper onto -- said that it was "useless" and only "put off" what i'll need to face anyway. my husband doesn't like him at all...there have been times when i've said "thank goodness the doctor seems to be patient with me" and he's like "he called you an addict and said that he didn't think you had a good outlook as far as being able to stay off drugs -- you've never been ON then until post-op! and you have been in withdrawal most of the time because your body is just very sensitive to the drug!"
sigh. so i am just going to hope that i can handle this...i had to sign something in ny state that said that i can only get meds from the same drugstore (of my convenience), i have to do observed urine tests, and i cannot get prescriptions for anything controlled without his permission -- so if something happens and i'm at the er or something they won't help me. i just hate having to call him for anything -- for my stomach...anything! are all pain management/detox doctors this way or did i just find the rudest, meanest one i could find?
Good luck to you as well!! So far nothing much has happened but it never does for a few days after a taper. I'm so scared though. I just hope it's not as bad as some of the things I've read...
So far no seizures -- my husband is around in the evening but I don't have anyone around during the day, which does suck but it's been the case ever since I came home from the surgery. I'm still wearing the last patch -- I read that a lot of people wear the last patch until it's definitely "dead and done" as a sort of taper down.
It's been months and months of just...awful. I'm perhaps too scared of this final "jump" off because of what I've read and such. I hope it's not so bad...this has just been horrible and the last time I saw the doctor he was just so mean. My husband was about to kill him -- he was trying to get me to admit that I was a drug addict (ie, he didn't just want me to recognize that I had gotten addicted to the patch after a few weeks but that I was a full on drug abuser and I would always be "in recovery" and should attend NA meetings). And it's not like I don't think maybe some counseling would help -- I do. But he seemed to be wanting to make a greater point that "this" was my life from now on. Sigh...so my husband has been trying to get me to "unthink" that.
Better get back to bed...I woke up for something to drink (gatorade -- seems to be just about all I can handle most of the time now days). Feeling very achy...
It's been months and months of just...awful. I'm perhaps too scared of this final "jump" off because of what I've read and such. I hope it's not so bad...this has just been horrible and the last time I saw the doctor he was just so mean. My husband was about to kill him -- he was trying to get me to admit that I was a drug addict (ie, he didn't just want me to recognize that I had gotten addicted to the patch after a few weeks but that I was a full on drug abuser and I would always be "in recovery" and should attend NA meetings). And it's not like I don't think maybe some counseling would help -- I do. But he seemed to be wanting to make a greater point that "this" was my life from now on. Sigh...so my husband has been trying to get me to "unthink" that.
Better get back to bed...I woke up for something to drink (gatorade -- seems to be just about all I can handle most of the time now days). Feeling very achy...
yes my husband is around but only at nights. thanks everyone for your responses. this has been a hell ride. i was on no pain killers before surgery and now my whole world has been detox...nightmare...
oh no. yeah, i have nothing to taper onto. just have antinausea drugs and zanaflex for muscles. i read that people just leave the last patch on for a better taper. so i'm supposed to have changed patches tonight and did not...just keeping the old patch on and letting it run out (not sure how much is left over but it always seems like it must be a fair bit but maybe that's just gel versus the active drug). i am so scared...
Your doctor is more than a bit of a jerk. So sorry you're dealing with this. Unfortunately, coming off even 25 mcg is going to be rough. Ask him to continue your taper with oxycodone. You can get so much lower on the pills and very little withdrawal. I tapered off alone and it wasn't easy. The advice here is wonderful, even for people who are dependent versus addicted.
One of the members I talk to, said it was 7 days full of hell. As long as we start to feel better after that it should be all that be you and keep trak of the days and and countday till the time you feel better I am going to get off fentanyl here soon as well I am hoping to strat thursday when I go to the dr.
Thought are with you I hope things work out for the best!
Thought are with you I hope things work out for the best!
Hey sorry you have gone through all of this.Now that you are down to 25 it should be alot easier than before when they cold turkeyed you.Do you have anyone to monitor you during this process?? I am kind of concerned about this because of your history of seizure. Please keep posting and let us know.Stay hydrated during this time and try to eat or drink some protein shakes. Hang in there
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