Quitting Fentanyl UGH!!!
 

Hi everyone I'm new here....when I joined, I was floored at how many people and posts there are with peripheral neuropathy ! :grouphug:
That in itself is quite a comfort - knowing how easy it will be to talk to you...

I won't go off on a long speal, but in a nutshell here's me : Small Fiber Neuropathy of 5 years, It's in both legs and it's getting harder and harder to walk, go upstairs,,etc... The pain is absolutely intolerable... tried ALLLL the standard meds to no avail... the only thing that has kept me from losing my mind are the stronger opioids, but I'm so tired of being on them and my tolerance just keeps going up. hormones are depleated, etc etc.... Desperately want my life back, so am going to do the SCS (spinal cord stimulator) in the hopes that i can back way off of these meds. HOWEVER, after being on the Fentanyl 100 mcg patches for over a year I know it will not be easy to quit. I've heard of how awful the withdrawals are and I've experienced it to a small degree when I've tried to taper down.....i quickly slapped another patch on cuz i realize how terrible it's gonna be and i don't think i can take that degree of torture!

I will be talking to my pain doc soon about this, but i wanted to get support and advice from the ones i trust the most - - the patients !
Would appreciate input from you, good OR bad. I must face the reality of what I'm dealing with...
I will go ahead and submit this post, and in the meantime I will look thru the stickys. I know there is a lot of wonderful advice and info on PN.
My other concern besides the withdrawal, is HOW to determine my pain level during my SCS trial implant because to be quite honest, I'm afraid I won't know where my original pain ends and the withdrawal pain begins !!

Please Help !
Rae
:thud:

:Wave-Hello: Welcome to NeuroTalk Rae! I don't have PN or experience with that medicine but someone should see your post and offer some ideas.

I've had to wean myself off some meds and some are just not easy at all even when I taper off of them slowly. :thud: But I have successfully quit them, it just seems it takes awhile for my body to adjust.

Anyway, some of our PN board regulars should be along sooner or later and share some thoughts.

cold feet
 

I guess my main confusion is that the Dr who will be implanting the SCS told me to come to the procedure WITH my pain meds on board .....so how will i be able to tell him if he's got the leads placed right??
But when i was getting ready to leave from our consultation visit, he simply said, when you go home with the trial, just don't get confused about the pain of withdrawals vs. getting relief from the SCS. mwah??:Scratch-Head:
Don't get me wrong, this guy is very renowned and confident and has a good reputation with these implants and alll.....but i'm just confused because I don't see how to get an accurate response when trying to decifer if the SCS is gonna work? I need to hear from SCS patients who have done this.....
I think i should have titled the thread differently ? My fear here is twofold... one is getting through the trial with a straight answer and the other is that I've been on strong pain meds for about 4 years and i know I'm gonna need to be under a Doctor's care to get off the meds, so as not to throw my body into complete mayhem....!! Really need direction here! Please chime in!
Rae
:ranting:

You might ask at the RSD forum about SCS...
Some of them have had this implant:

This is an example thread:
http://neurotalk.psychcentral.com/sh...ht=spinal+cord

When you search, use a longer word than SCS...
I used spinal cord

Thank you MrsD
 

Thanks so much MrsD ! you are so helpful to so many people...i don't see how you do it - spreading yourself so thin! Just wanted to say a special thank you - i can see you are a special part of the backbone of this forum!!
Have a great Thanksgiving
:winky:

I recently went off fentanyl 50mcg. It's been two months. I did it pretty quick, going from 50 to 25mcg to 12.5mcg and off in a matter of 10 days. It was pretty quick and I advise you to speak with your physician and also research what to expect so you don't panic when things happen.

Opiate withdrawal is not fun, however, the worst is benzodiazepine withdrawal which I undertook after the fentanyl withdrawal. I have been in some state of withdrawal now for 2 months. I am 28 days past the last klonopin and this has been agonizing physically. I am finally up and walking and eating, and much of the brutal stinging, burning and pain is fading. I get momentary glimpses of what it feels like to be normal. I am in less pain not more. I will warn any one going off benzo's to talk to your doc....I had to set up my own ICU in my home, my BP was extremely labile. I puked for several days, and could not eat. My body went into overdrive and I lost 15 pounds. I had to use supplements as I could not eat. I needed to use other meds, such as BP meds while I was in active withdrawal.

Likely I went down too fast, however, I was at tolerance with a 1.5 mg daily dose of klonopin and did not want to go up. Now I am in post withdrawal where my GABA receptors need to reform or be replaced, and gene transcription is going on, to reprogram and replace all the structurally changed receptors that klonopin caused. This can take years, but seems for me to be going fast with the exception of normal sleep. Some people are permanently altered. All that one can do at this point is hope and pray that one's body recovers on its own.

In the last year, I also quit Ambien.

I researched opiates and benzo's prior to going off, and found several interesting things. One is the Paradoxical Pain Syndrome, which can only be cured by going off opiates. I think I was having this, since my pain went down after I got thru the withdrawal off fentanyl. It is worth researching.

The other is benzo tolerance, and the only way to deal with this is increasing your dose or weaning off. I have never encountered anything as brutal as going off klonopin, and I was on a small dose!

In the next few months, I think I will get to baseline with my neuropathy. I know for sure, that I have autonomic neuropathy and polyneuropathy as my tests were done before I went on pain pills or benzo's. My neuro did not like my being on opiates or benzo's. I just wanted to live my life actively and felt the meds would help me with that....(not).

I do have a maxed out ANA, low C4 and receive IVIG, which, without it, I do not think I could have gotten off my meds. My pain has gone down since IVIG was reinstituted.

Anyway, perhaps you should allow yourself to stabilize off the fentanyl before getting the implant. Keep telling yourself that you will be OK as you go thru withdrawal. You can do it. Opiate withdrawal is fairly short in duration. Bennzo withdrawal and post-benzo syndrome lasts years. I would never have thought that such a difficult drug to get off of, would be given out so easily.

Oh, I am still dealing with RLS, and take a small dose of Mirapex, and that is all I take.....now if I don't start compulsively gambling or carousing around, I will be fine, LOL.

I wish I didn't have to mess with my neurotransmitters at all....but sometimes, you gotta do what you gotta do.

Hey Cyclelops thanks !
 

Thank you for sharing your ordeal....sorry to hear it's been such a rough go.
You've got my support!
One of the things that stuck out the most in your post was the "Paradoxal Pain Syndrome" wow ! I betchya anything that's exactly what i'm dealing with! It's such a cycle of madness man!! It gets to a point where i don't know for sure which is my original neuropathy and which is the 'rebound' pain that the meds do...:hissyfit:
So, that's precisely why i'm gonna try my best to get off the pain meds....
But Lord have mercy the minute i can tell withdrawal starts setting in and that awful feeling of dread/anxiety/depression/guilt.....just totally consumes me and i can't do it! And THAT's just the MENTAL part! I can tell that the physical part will totally do me in......i admit to being a wimp :o
I was thinkin that the Xanax will help me get over the hardcore Fentanyl, but reading your post makes me re-think...... yikes!
Keep in touch and keep me updated on your success and thanks again for your time and empathy!
Rae

For any one debating going off meds.....save the pain meds for last and get rid of the benzos first....I did it the other way around, and if I had it to do over, I would have DC'd the benzo first.

Anyway, I am slowly feeling better. I will hit a wall at some point, as the disease will still be there and then I will have a good idea of my 'base'.

I'd almost suggest checking into a rehab facility/psych floor to safely taper off the medication.

I'm sure then you can also get some sort of medication to ease you off it/help with withdrawls.

*I watch too much tv*

Some people detox off fentanyl patches using Subutex or Suboxone (has Naloxone in it).

This sublingual narcotic requires special doctor certification to prescribe, but can be used to detox off other narcotic treatments.

More here:
http://www.suboxone.com/?qs=ga&s_kwc...FQsMDQodEFp6pA

I had a patient on high dose fentanyl (due to a car accident and neck injury) who used Suboxone very successfully. He was able to return to work and was very happy with his new life.

Thanx :)
 

Thanks for keeping this thread goin......this is pretty important to me....

The thought of going into a rehab/psych.....yikes. Not that there is anything WRONG with it of course......some folks here may even have done it and if that's what ends up happening then i'd humbly ask for support :o

But - the politics behind the procedure i'm probably gonna have to do --spinal cord stimulator -- would most likely 'deny' me as a potential candidate with the 'drug dependency' tag pinned on me if that were to be in my med record history.
Plus, if all else fails and i just need to stay on the meds indefinately, then...well.....see where this goes? I'd forever be tagged with the 'drug' thing.
That's why i started a thread down the list called "Naltrexone Anyone?"
I wonder if this med is in the same family as the one MrsD is talking about.
Haven't been able to access the site u provided (yet) having problems with my phone and internet lines (snowstorm)......but thank you and i will check into it!

Those 'rapid detox' places claim to be very discreat and private so as not to have it accessible by medical record personnel...... ?
But whatever. Other people have had to deal with this and i'm no one to get any 'special' treatment....but just want to check out the options and try to do this as 'responsibly' as possible.... ? My Pain doc has been wonderful and i WILL be talking to him about all this, but i'd like to know what's out there B4 i jump into tapering the meds..... I'll ask to see if he is specially licensed to prescribe as MrsD suggests...

Thank you all SO much! This forum is all i have :Tip-Hat:

Rae

Naltrexone is a drug used to curb addiction (craving).
Its brand name is Revia:
http://en.wikipedia.org/wiki/Naltrexone

Naloxone is:
http://www.drugs.com/mmx/naloxone-hydrochloride.html
This is a true antagonist and added to opiate drugs so they cannot be dissolved and injected/snorted. It is used in emergency situations for overdoses.

High dose Revia used to be used for alcohol addiction, but it caused liver damage, and now is not commonly used for that reason. (50mg doses).

But LDN, low dose naltrexone is getting alot of attention for many things, as the Wiki article explains at the end.

The usefulness of Suboxone is that its dose can be titrated down, more easily than fentanyl patches.

with the advent of electronic recordkeeping for medical records, i wouldnt count on the fact that you were treated for an addiction in a mental health facility remaining private. There are already currently clearances that you cannot get if you have been treated for alcoholism or drug addiction or admittance to a mental health facility. Many states also deny pistol premits or the ability to buy a firearm if you have been treated for a drug or alcohol addiction. Who knows what future restrictions will be put in place.

I think it is possible to come off fentanyl without going into a rehab. Talk to your doc and get patches that cut your dose by whatever your doc thinks is reasonable....or what you feel is tolerable.

I have gone off fentanyl more than once and had no real issues....just the usual stuff, restless leg, sneezing and flu like symptoms over a few days.

I don't want to advise any one, since, we are all different.

Klonopin is another story. That withdrawal truly makes on feel like one is dying and it lasts a very long time.

I want to know how they would know if you'd been in a mental facility or rehab?
Those are private records, and they can't get those accessed.

Even if you've been taken to court, and labeled mentally ill, it doesn't show like if you have a parking ticket, or other "law problem"..

So.. buying a gun for say hunting.. not an issue.
Buying a gun for say.. suicide.. well.. I'd hope you'd not get that far.

ha :) thanx diagnonsense
 

:winky: didn't quite know how to respond to the 'gun' thread.....but u did a pretty good job.......
Actually, i'm way too classy for suicide.....i had planned to hire a 'hit-man' to do it FOR me. :Popcorn:

But in all seriousness, don't mean to make a 'joke' out of it.....chronic pain can and certainly HAS led people to do it.
Thanks to forums such as this one, however....at least a person has a fighting chance against the all-empowering cloud of hopelessness and DOOM... years back (before the cyber era hit) MANY people DID do the deed and/or get 'put away' and written off... Diagnosis such as 'depression' & neuropathy hadn't been put into a term yet. Or at least not openly shared.....

So glad i found you guys....

actually there is a national data base of people who have been adjudicated to be mentally ill or who have been involuntarily committed to a psychiatric hospital. Its a fact. Recently the federal government has been leaning on the states to get that information reported. Some states had not been reporting it, they are now.

Who said anything about suicide? I was giving an example of how a data base can be used. Security clearances are another example. I really dont know how the fact that you have been in rehab would become known under the present system. However with electronic medical records it will be on the record. Also if you lie and say that you have not been to rehab on an official form, you could be prosecuted for perjury.

So true Echoes long ago ......
 

Creepy as it seems, it IS the hardcore truth! "Big Brother" indeed! I think that was Orsen Wells back in 1984 ..... ?
I bet we'd be completely freaked out if we only knew the half of it!!

I do appreciate your imput ! Keep it comin...... :Thanx:

One thing that I should mention is that you can use oral medication to step down from the fentanyl.

I went off my meds for lots of reasons, one was to keep my present treatment infusion....I figured if we did not know how I responded, they were not going to keep it going. The downside is, yes, I am in pain, but, I can feel exactly where the pain originates, versus when on the meds, pain came from everywhere.

Your insurance company has access to all records for services they pay for.

Wow, and national data base for people treated for mental illness issues??? Half the country will be in it.

jackpot!
 

That's EXACTLY what i was lookin/hopin for.....to have something to use while 'stepping down' from the Fentanyl - thank you for giving me a good way to word that to my pain doc.....
but see, shows what a wimp i am - always thinking there is SOME 'magic pill' to help me get away from the OTHER 'magic pill'....
Hats off to you Cyclelops for enduring the pain to see where your TRUE pain is originating.......that's pretty darn tough. And i thought i knew 'tough' (i have 3 kids from 2 pregnancies to prove it!) ha.

YOU are doing what i WANT to accomplish....finding the 'base' as you put it.
5 yrs goes by and the pain thing gets all mixed up into one big batch of poop stew. Ain't this a dandy :stirthepot:

The main reason i'm goin on and on about this is mainly cuz of the SCS implant i'm probably gonna end up doing (pending Ins approval)......
Just need to first make sure i know what i'm dealing with (painwise).....
Neuropathy is such a ....... mystery.
Fragmented information from the medical community is the best i've got to work with.... I'm gettin WAYYY more info from you guys!

Hope you're doin ok with your ordeal . How in heaven do you deal with this MENTALLY....i mean...doesn't it just 'get the best' of you at times ???

There are 28 US states that do not currently partake in the submitting of the mentally ill records (thank God for some decency in the world).

I believe that submitting of those records is a mass violation of HIPPA privacy, and that if they want to buy a gun its their right.

What they intend to do with it.. well, so long as they don't go off and do a Virginia Tech thing (which is why they rediculously want these records, when they have no proof that the person was mentally ill, they just assume the person was "off their rocker", and thus all mentally ill persons are capable of going to their college and opening fire)

NE how, here is a list of the states that violate patient confidentiality:
The states that provide some or all mental health records are Alabama, Arizona, Arkansas, California, Colorado, Florida, Georgia, Hawaii, Iowa, Kentucky, Louisiana, Michigan, New Jersey, New Hampshire, New Mexico, North Carolina, Utah, Vermont, Virginia, Washington and Wyoming.

It isn't too bad. I had to get off meds to really know if my IVIG is working well....I have a very high ANA and other autoimmune markers, and I want to know what is what. It has taken years to get a good clinical picture and my diagnosis is still morphing.

I keep telling myself it is all a matter of physiology. Sure there are real bad days, but, in the long run, I want a to have a good handle on what is disease versus what is med side effects, or tolerance WD.

I am on one side of the mountain and you on the other, but, hey, you have legs and you will walk over the top, and be fine....I suggest you discuss cutting back on fentanyl, by 12.5mcg steps and have some oxycodone for step down. You may not get totally off oxy or hydro, it just depends.

I don't know if you have PN, but if you do, make sure that you don't have some other disease process evolving before you have the stimulator put in. They told me my PN was idiopathic and now 5 years later, my ANA is thru the roof, and my C4 is low. I never know what a blood draw will bring.

Mountains indeeeed
 

Is 'Paradoxical Pain Syndrome' and 'Tolerance Withdrawal' basically the same thing?

I am sure there are differences. I imagine that chronic use of any medication may make us need ever increasing dosages.

Not every one gets paradoxical pain. I actually felt LESS pain when I went off fentanyl, and increasing the dose of it, would have likely caused more pain. I can't explain that phenomenon. I also felt more anxiety and pain on meds intended to decrease anxiety. I have a lot of paradoxical effects to meds. Just not wired right I guess. Assumptions are made by docs that all people function the same. This is not true. 10% of Caucasians lack the
D26 enzyme which metabolized a lot of common drugs such as SSRIs and antipsychotics, such as abilify and zyprexa and risperdal.

Tolerance Withdrawal should be relieved by upping the dose, but understand that this will result in ever increasing dosages. Paradoxical Pain is not relieved by upping the dose.

Interdose Withdrawal is when you experience withdrawal symptoms when the drug starts to wear off. You have to look up the half life for each drug. I was sick for months with interdose withdrawal until a doc figured out that I was experiencing that. That was back in 2000, and involved a dose of xanax at bedtime only. I would wake at 3am in incredible distress. Years later, I ended up on klonopin for sleep.....bad idea. That has a longer half life, up to 80 hours. You don't get into major withdrawal until 3 days after you quit. Ugh. It takes a good 30-60 days to get it all out of your system as it is lipophilic (stored in fat cells), then your nervous system has to reprogram itself. Interdose withdrawal can take place on a short acting medication or if you metabolize your long acting shorter than the script. Like 2 days for fentanyl versus 3.

Whenever people have unexplained disease, it makes sense to look at meds.

At least now, I have a good idea of my disease level, and can make sense of my lab work, as far as correlating symptoms to labs.

A lot of disease is iatrogenic, but you can't know what is what, if you are reacting to meds. I don't know what you have, if you have PN, a spinal cord stimulator is for central pain, and PN may go unrelieved. This is all fairly new technology. Don't get rushed into any procedure until you have fully researched it, and have answers as to why you are suffering from pain. Keep in mind, that 5 different docs may give you 5 different opinions.

It takes discipline
 

Here I look at my Lyrica, Tramadol and Oxycodone. What a friggin cocktail. Oh...did I mention Lexapro for my depression/anxiety,gemfibrozil for my cholesterol, and atenolol for the blood pressure. Enough already!!

I have to get off the Oxy....possibly reduce the Tramadol and Lyrica. It is scary. I missed two days without the so-called synthetic opiate Tramadol, and boy did I feel crummy. I can imagine removing the big one from the mix. But, I have to put a stop to the madness. In order to get complete relief I have begun taking more of the 5mg tabs of oxy. I do not like the pattern this is taking. I will have to satisfy myself with partial pain relief and avoid the consequences of narcotic overdose.

Jak, You are on a lot of nervous system depressants and going off them is going to cause some substantial discomfort, and you have a stressful job to deal with. Perhaps your doc could advise you how to decrease drugs. You can't tackle all of them at once without serious issues.

I am not anti-opiate. I have to use a vicodin now and then, like once or twice per week. I am in substantial pain, but ironically, I was in more pain when I used a lot of pain meds daily.

I no longer work out of the home either. Every one is different. I am in the situation that I can adjust my life to the low level of energy and high level of pain that I have, and that seems preferable to the side effects I had on drugs.

I do not want to imply any value judgment on using any pain meds, I just want people to be aware that in some people these meds cause more pain.

I am all for pain relief, provided it does not mess me up and make things worse. For me, apparently due to some weirded out nervous system or inadequate liver enzyme, I do not do well with drugs.

Any one see the special on the really old indo-european mummies? They found a shaman, around 4,000 years old.....he had 'medical marijuana' on him, LOL. Relieving pain is fine....as long as it does not cause a bigger problem.

I am most revved up about benzodiazepines, since the withdrawals, whether interdose, tolerance or discontinuance, are really awful. I never, ever want to go thru that again. I never suspected that benzodiazepines could cause such awful symptoms and hideous pain.

Unfortunately, I still have disease process going on, but fortunately now, I can figure out exactly what is what.

I know
 

My Dad took early retirement at 55. Anxiety...panic attacks...back then they didn't understand the whole serotonin thing. He was on valium for 25 years. I did get my Anxiety/depression under control with Lexipro. I know the chemical stirring that is going on with the narco crap. I do need a good game plan. I hope to hold on for another year and a half, and then I can retire. I can deal with the pain without dealing with predatory offenders and such.

Marijuana Mummies :)
 

Sign me up. :Girl(angel-flying):

There is a term some pain docs like to use "Drug Holiday".

Believe me, there ain't no 'holiday' about it! But basically, in trying to keep tolerance levels down, backing off the meds is the only way to do it .
Easier said than done......that's basically why i went further out on a limb by asking about 'Naltrexone' .....and MrsD had some good info on these type meds (further up on this thread). The websites she provided explain the advantages/disadvantages.
There ARE options out there. The hard part is getting the right Doc to really sit down and individualize our situations and chemical makeup. Even at that, it's up to US to be the real detective.

Getting support from other pain sufferers has been the BEST medicine.

okay
 

I'm going to cut down my oxy from 10 mgs 3 x's a day to 2 x's a day. Also I cut the Lyrica from 2 in the morning...to 1 in the morning. Skipping the noon and just taking one at night. Also cutting the tramadol back from 3 x's a day to morning and night. I am determined.

i empathize jakatak
 

You and i are in the same boat and my heart goes out to you.
Just be careful and make sure your doc is aware of what you are doing.
Maybe concentrate on cutting one at a time..... ? because if you are making changes/adjustments to several simultaneously, then you might have a hard time figuring out which med you are benefiting the most from.
It's always best to make certain your doc approves. He (hopefully) is looking out for your best interest.
Plus, keeping a 'journal' helps me to keep track of when i started/stopped certain meds and dietary habits.
Keep us posted! We all can learn alot from each other, even tho our chemical makeup are all different.
Currently i am sticking to a new vitamin/herbal cocktail, but i also have changed some of my dietary habits. Hopefully i can eventually ween out the pain meds. Some meds (such as my thyroid medication) DON'T mess with. It'll send my body into mayhem and i'll be back to square one.

Hang in there.
We're all in the same boat.......:Sinking: