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Getting off Fentanyl Patch? My Story
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Getting off Fentanyl Patch? My Story

A little background first. I am a 41 yr old mother of four with the most amazing husband ever. This all started for me in 2006 when a botched cervical fusion left me with a huge spinal fluid leak for over 3 years. The first 18 months of the leak were pure heck. For some reason the leak was undectable. I went to many major hospitals in Ohio and West Virginia and none of them were able to identify this leak. No one would help me with the exception of my pcp that I love dearly! But his help was limited after being to so many facilities and seeking help I was just diagnosed with complicated migraines and conversion disorder. However, I had been a OB-RN for 10 yrs. and knew what I was experiencing was a spinal H/A, so I ended up making my own appointment to the Mayo Clinic and after these 18 months I finally got the diagnosis of spinal fluid leak but they did not recommend surgery to fix this due to the risks of doing more damage than good. So I came back home with the suggestion of pallitive care with narcotic pain meds and antiemetics, muscle relaxers etc...Then after 18 addition all months I was in our local hospital the entire month of January 2009 and my Dr. said we needed to seek additional help as the high doses of demerol I was on was becoming ineffective. I was lucky enough to make it to the expert dr. for chronic spinal fluid leaks. I went to LA to Cedars Siani Hospital and saw this Dr. He did eventually identify the leak, and after about a month of different techniques to fix the the leak he did go back into my neck, took out half of my c5-c6 fusion and lo and behold I had a 2mm hole in my dura. After doing this kind of surgery for 20+ yrs. he said he had never seen a leak as big and the patient was walking around. Anyway, he successfully fixed the leak and expected that all would be ok. NOT! I came back home and did fairly well for about 4 weeks and then the discomfort started again. Since the leak was now "fixed", again it became hard to get help. No one could understand why I was having such chronic pain. Well, everyone seemed to forget that through this process I had had 3 neck surgerys, a T1-T2 laminectomy and a broken L1, not to mention many other system problems such as osteoporosis, pituitary, and thyroid problems. I have now exhausted my local ER and am seeing a pain management Dr. This is the only way we could get any help when breakthrough pain is unbearable. She now has me on a 50 mcg fentanyl patvh every 48 hours and it is HORRIBLE! I feel like I am in constant withdrawl (withdrawal) when I know I shouldn't be. I am continually anxious and no longer have a drive to do anything! I hate it! I did call my long-time family Dr. this morning. I am lucky to still have him, but he is also a member of my church, a long time peer, and my first cousin is his nurse. He also know how much I dread pain meds as, I went through a brief stent of addiction following a postpartum depression many years prior and had helped myself through rehab and pure reliance in God. After that I was at the top of my life and healthier than ever and cannot now get back to any resemblence of that! So anyway, back to the present, he said to use my lortab until monday at which time he will speak to my pain specialest and try to come up with a plan to "reset" my system by slowly, under supervision (probably inpatient) get me off of all meds and see where my baseline is. As much as I would love this I am scared to death that I will be in severe pain with no help! I have been through withdrawl (withdrawal) more than once and am not looking foward to this process. Anyone out there done this type of "reset" or have any advice or help?
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12 Comments Post a Comment
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Avatar_m_tn
first of all i want to say weclome to the forum...and secondly i am soooo sooo sorry for all the pain you have endoured over the years.

unfortunatly i don not have any experience with the "rese"t you are talking about...however...there are so many knowledgeable and caring people on this forum who will definatly be able to give you som advice or feedback for i am sure some have gon through the resetting process...

just haing tigh and more members will be coming along to help and encourage you..

again welcome...you will find much advice and support here
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Avatar_m_tn
please excuse my spellings...i am on my touch phone..and it has a mind of its own..i swear it tries to make me look more loopy than i already am..
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1895503_tn?1332376974
Dear Friend,
I haven't been through anything compared to you--I have a false disk from a surgery that didn't take away all the pain.  I am on pain meds.(Opana ER which is comparable to Fentanyl--I think it is ranked right under it).  I am in the same situation as far as needing to get off the drugs to know how much of the pain is hyperalgesia, withdrawal, and/or is real pain.  I have tapered to 1/3th to 1/4th of my normal dose and am now struggling with intensified panic/anxiety and some pain.  On Friday I have an appt. with my pain management doctor, who thinks I should be on 50% of what I am now.  I have no idea if she will be supportive of me taking this at a slower pace--and I don't know how to explain it to her.

But what I really wanted to tell you is that you aren't the only one at this place.  I am very likely to go to inpatient tx -- and like you, it won't be my first time.  It really is the smartest thing to do when I look at how accidental overdoses happen when people are getting off meds.  

Like you, I have the fear of getting into pain and having no one do anything to make the pain go away.  That is one of the scary things about treatment.    Anyway, I am tired now, but I really wanted to tell you that I am here, and have a situation that is scary like yours.  I also have faith lie you do, and a husband that is very supportive.

I just wonder how much longer we will have to wake up and feel panicked about our situations.  How does God work in these processes?  I know we both have a lot of faith.

Please PM me whenever you want to.  Know I am here for you.  I know it is the hardest thing for us to trust that we are going to be okay.  Perhaps knowing me and Angel_ina are here for you will help.  

I have 1 child.  She has 6.  And, we are great support for each other.  As I speak for her, we are both here for you.  Sending our love.

Big hug,
Marie
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Avatar_m_tn
Marie is absolutly right.....we support one another....and would love to be supportive of you as well...and as marie also said you can PM either of us if you would like at any time....we are here for you...there is such a great support system here and a wealth of knowledge amongst the members on this site it is amazing....we would love for you to be a part of that...

angel
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1981878_tn?1328446074
Hey there and welcome... Boy hv I been thru it!!! I am so sry for it pain. I think I would also go the in patient route... it is dangerous to take much of anuthingwith as strong as those patches are. Be careful and hang in there. Keep posting and reading these posts. They and we can be or lifeline. We r here so keep posting...
hugs from Texas... Deb
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1047946_tn?1332611629
I too am sorry for all the pain you have endured. I've had two back surgeries which helped some but not completely so it's hard to fathom the pain you have had to go through.

I've never been to inpatient but from reading other people's experiences I would think it would come down to each facilities protocol. Some just monitor your vitals while you detox while others will give comfort meds such as trazadone, valium, etc. There are even some who will use suboxone or methadone for a week. Is it possible for you to call them and find out what their protocol is?

Either way, you've been through withdrawals before so you know what to expect. I've hard fentanyl detox can be pretty rough but it's nothing that you cannot do. Sit back and think about all you have been through with the pain and previous withdrawals. There is nothing that you cannot handle! As you know, the worst of the withdrawals only last about week. What's one week of your life? It's such a short amount of time.

You will get through this okay. Sometimes we have to dig deep to find that inner strength to be able to handle it for another minute be we all have it. When there just take it a minute at a time. We're here for you. Even if it's just to vent, we'll listen.

Best of luck to you and keep us informed. I'm pulling for ya!




Brian
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Avatar_m_tn
To all,

Thanks for all the comments, today is a little better. My family doctor did get me a script for valium yesterday and told me to just use my lortab until tomorrow, problem is he told me to just take them when I thought I needed even if it is more than the pain doc perscribed, so that means I will also be out of them early and don't know what I will do then. I am just hoping that his office will contact the pain doc as he said and we will figure it out. I feel like some ways it is like withdrawl (withdrawal) and some is depression. I personally think that is in general the patches. I've used them before without success. I hope that they will be understanding and help. It is also particularly hard right now because I have a senior in high school that has had a very hard time dealing with my illness since it began and her regional and state swim meets are in the next two saturdays and I promised her that I would travel with the team. And to top it off, she has enlisted in the Marines and will be leaving this summer. I do have a lot of trust and faith in my Lord and I know he will carry me through this it is just hard on my husband and kids to always be on eggshells wondering if I am ok day to day.
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Avatar_m_tn
Oh and by the way, we are not talking about just pain med detox. We are talking about every medicine I'm currently taking which includes a couple of antidepressants, valium, lasix, Zanaflex, and progesterone. So all of them have the potential to make me fell awful if stopped. But I really am wanting to find out if I can get to a point where life is bearible and liveable at the same time, instead of either to painful to do anything or to depressed to feel anything. People used to tell me I was spunky, and I still am inside, I just can't seem to bring that to the surface anymore. I feel like I am only existing, and I don't want that.
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Avatar_f_tn
We are all pulling for you and hoping you get some real solutions to your issues.  I wanted to just post to you and tell you that I firmly believe some of my pain issues were chronic long term withdrawal symptoms that I believed were other things.  I also have lived with chronic headaches and migraines most of my adult life and with headaches when you take motrin, migrain meds for example you can get rebound headaches from just taking all the medication so there are times you have to stop taking anything, live ith the headaches and deal with it - I'm wondering, for myself, if this has been the case with the pain meds - I suspect it has and am looking forward to every new day to see how I feel.   You have a difficult journey and I'm so sorry.  Just wanted to say hi and you will be in my prayers!
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Avatar_m_tn
Thank you for your kind words. I love your nickname. I was a runner when I was healthy and I never thought I would continually hear my H.S. track coach in my head screaming "push it all the way through". The inspiration I draw from this is enormous. I feel like I am forever running a marathon and don't know where the finish line is. But I have decided that the finish line of life is at the gates of heaven and I will continue to push through this race and make it to the other side. I CAN....THERFORE I WILL!
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Avatar_f_tn
Oh my gosh, you just brought back a memory of running in high school, when you said "push it all the way through" - I ran hurdles and I remember our coach yelling that.  It is with pure mental fortitude that we will push through whatever comes our way - I truly truly hope you get some resolution to your situation hon.  Hang in there!
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Avatar_m_tn
It has been a few days but it is ironic that I ran hurdles too 100H and 300 Lowes, still have the school record I believe, lol 24 years later!
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