Fentanyl Withdrawal...Any suggestions??

Great post and helpful to me!

BUG,

lost my text to you, don't know if you got it or not.  Am not sure what happened.  My old clunker of a laptop hiccupped I guess.  Anyway, at the risk of repeating myself....I am not familiar with the term "narcotic rescue drugs"...could you please enllighten me?  I will keep this short as my the text I lost was getting very long.  Thanks for your very helpful post.  I am so appreciative of everyone who has replied and wished me well on my quest for getting off of the fentanyl.  And actually, the first doc I went to for pain control was an anesthesiologist and she did tell me that fentanyl was a favorite amond her "peers"  I guess they should know what the best is!

Dear Leigh65923,

I am happy you wrote here as I didn't receive your text.

I completely understand your question and can explain. When a chronic pain patient is treated with narcotics they are typically treated with a long (slow releasing) acting narcotic to keep a steady state or steady level, of medicine in their blood. However there are times when this chronic pain patient has what is called "break through" pain and the slow release medicine is not able to control the break through pain thus some Drs prescribe a fast acting ( fast releasing) narcotic called a rescue medication. However the draw back of using rescue medicine is the slow acting narcotic will become to weak MUCH faster thus requiring the slow releasing narcotic to be bumped up because the same drug is usually used but in different releasing actions for example Duragesic would be a steady releasing drug or slow release drug and Actiq would be the rescue  med for breakthrough pain.

This is in laymens terms to make it easier to understand.  

 

I hope this helps.

 

Marty aka Bugmann

 

So, in other words  I am really screwed because I take 1-2 7.5 hydrocodone every 4-6 hr for breakthrough  pain in addition to the fentanyl?  I have never had much of a problem if I don't take the vicodin for 2 days  or so, but this all has me thinking I am in for more problems than I ever imagined.  While MS is not fatal, it is not curable either, and tends to  progress as the years go by.  My main symptom is pain.  Oh well.  Thanks so much for the info, it cleared things up for me.

John I was reading and working on a reply to a message I got from you but today even from the email link, I am unable to locate your message????

 

I have a real good idea about how you felt while attempting to stop the use of fentanyl. I did a Morphine pump trial where they insert a cath into the epidural space as close as possible to the pain site cover the insertion with a Bioclusive wound cover and they adjust the pump to give you the level of pain relieve. This trial failed miserably!!!

 

 When I returned for follow up I said the pain control was terrible, but while I was in hospital they were pumping full Lorazepam,  of   8 mg a day, and I was beginning to have DT's. So the pain Dr gave me Lorazepam for my DT's. In a few more days I called him back to say his 1mg 3X a day was not helping my DT'S so he kicked me 2 mg tabs 3X a day. Well I roughed it out for 13 days of the 14 day trial and just said give me  back my patches.

 

Depending on ones dose like mine 300mcg/hr ev 48. If I went cold turkey I would die from  the shock of what the absence of Fentanyl will do to me after all these yrs using it at the max dose.  Yes some pain meds like Hydrocodone and Oxycodone  DT's begin to improve and a day or two but not Fentanyl, its a different animal than the others pain killers. The lower ones does is I feel the risk of danger lowers. I always wondered if that 24 hr detox under anesthesia works, but my Dr said I would need to be clean for at least 6-8 months before I could begin near the beginning of Fentanyl therapy. No thanks I dont think I can can take 6 months of that pain from all the hardware in my back, arthritis, and cancer I have currently .

 

Please let me know how you make out as time passes

 

 

Marty aka Bugmann

 

Marty,

I think you need to send some letters out to different pain clinic practitioners to find the one who is inventive enough to help you in this journey and to do it in a humane way. It appears that your pain is at a very high level, but also seems like you don't want to live in the fentanyl cage anymore. You are on a serious dose of this medicine, I have to believe there are programs or specific physicians who can walk you down this path into freedom. Good luck my friend, you're in my prayers.

John

John, thanks so much for your kindness.  I must agree with you totally.  My initial idea was to get off the fentanyl completely.  But when my doc did not offer a replacement med AND the dificulty I had the very first month trying to just add a few hours to each patch, I changed my mind a decided to just stay at the dose I am at for now and try to get down to every 72 hours.  But I am just horrified at how my body is not tolerating the extra hours at all.  I like to think that if I had known what I would be facing someday I would have tried harder much earlier in the game than 15 years on the stuff.  I think fentanyl is in every cell in my body and every cell fights any decrease in the level it likes.  That might sound goofy, but wow (!!) I never imagined it would be this hard.  I took myself off of valium many, many years ago and had no problems like I am having now.  That was a walk in the park and withdrawal from valium is supposed to be able to kill you. It did take me a year, but still, I must say I am very frightened by  what I have been experiencing with the very little decrease I am attempting.  The idea of being put to sleep for a few days and filling my body with antagonists sounds pretty good at this point, but I am afraid it might actually kill me. Sorry, I don't mean to whine.  I wish you the very best in your quest.  Thanks again for being so kind to me.  God bless you.

Hi Leigh,

Why doesn't your doctor put you on a combination of 50mg, 25mg, and a 12mg as a first step and stay on that for say 2-4weeks, then step down to 75mg by taking the 12 away and stay on that for 2weeks and so on, so forth. Also, why not put you on something like Percocet as a breakthrough med to help you with the tough moments. You can get there; you just need the right practitioner holding your hand on this journey. You don't need a doctor holding a gun to your head, telling you "ya got one month to get off these drugs I put you on". That's not medical care.....that's just "ass covering" to the highest degree and you shouldn't accept it.

Hey Tami,

Thanks so much for sharing. That is an EXCELLENT idea you have about taking just the amount of plastic off the patch that you want.  I never thought of that, I really think it would work, because, as you say, the first day on the new patch is just roses, no pain no withdrawal, then by Day 3 I am crawling up the wall.  I have finally, after 4 months of trying, gotten so that I don't have horrible withdrawal going to 72 hrs instead  of 48 on 100 mcg patch, but it has been a real battle and the last 12 hours of the patch is still really iffy.  I am amazed at how addicted my body got to fentanyl so very early on.  I was camping alone the second week of ever wearing a patch and realized I was not acting truly normally (always an interesting question for me ) so I decided to take the patch off one afternoon.  That night was from hell, the HORRIBLE painful spasms in my legs and arms were just too much too take, I was just amazed, like I said, it was only the second week of using it (15 years ago).  So I wimped out and put a patch back on and was shocked that it took so long for the withdrawal to stop.  I should have quit using it then, I really should have.  Now, whenever I feel like those spasms are going to start up I do something immediately.  Usually I start yawning uncontrollably before anything worse starts happening.  I have found so many similar stories  to ours here...it is comforting and at the same time kind of terrifying.  I don't know if I will ever completely go off fentanyl, The benefits of doing it certainly are less than the potential pain of the withdrawal.  At this point I think I could die trying, as I live alone.  Unfortunately my body is also very used to diazepam (similar to Ativan) so it really doesn't help much with the withdrawal for me.  My pain doc gave me a withdrawal "packet" that had xanax, and some sort of tummy pill.  It was worthless for me.  When he said "withdrawal packet" I was expecting some kind of morphine to help with it. Of course then I would probably just be switching addictions.  I wonder if any withdrawal can be as bad as withdrawal from fentanyl, though.  Well, Tami, thanks again for the brilliant idea about cutting the plastic off, I think it will be very beneficial just doing that to make each day of the 3 more similar.  Please stay in touch and let me know how things are going with you.  We are all the true voice of fentanyl withdrawal here I think, and I do hope that someone else is listening to our stories!

The best of everything to you,

Leigh

When I asked my doctor to help me to come off the fentanyl patches  he said as I did say  way way back  at the top of these messages that he  would only take me off these patches in minute ways and It could take over two years to get me off the drug  by cutting tiny strips from the corners of the patches, BUT he said If I did not watch the amount that I take off every 72 hours,  I would be crawling the walls and then he would have to increase my last dose  ie im on 125 mg  at the moment and then  would not be able to cope on my own ,  I asked if I could go into a unit (in England (I live in Cambridge UK)  he said because of my complex drugs that I do take with out the Fentanyl  he felt that I would not be able to come away from it.  Once again Im now on more pain  drugs because of the shingles/PHN. so I feel so low now,  I miss my partner  but somer one did point out that Chas would not have coped with my pain, and maybe its a god send that he died (I saw his Pain) from the agressive cancer to the brain.  But It still hurts and makes me angry that he left me like this.  (Sorry Folks) I wish I knew the answer to the PHN.  Take care folks Jocelyne  Cambridge UK.

Dear  Jocelyne 

 

I cant believe a Dr would tell their patient on Fentanyl patches to "  cutting tiny strips from the corners of the patches, BUT he said If I did not watch the amount that I take off every 72 hours I would be crawling the walls and then he would have to increase my last dose. I say this because cutting strips off this patch disrupts the matrix system from delivering the time released does that makes the drug depot under the skin where is slowly released into the blood stream. By cutting the patch you can get all the drug at once causing a possible OD, read the full prescribing directions inside each and every box.

 

I can never take or replace the love and caring you obviously got from your partner, but from the time maybe I can take his space with advise, support ad understanding.

 

Shingles can be very painful but I am not sure how much of your upper body is effected but this horrible illness, does this effect where you can place your patch?

 

Its my advice to not try to wean yourself off this drug yourself, you will need a Dr to help you and not the one mentioned above, because you are suffering and this  patch is an excellent pain reliever and it keeps a steady state of medicine in your system. for breakthrough pain maybe you need to just find the most comfortable position and stay there till the severe pain passes, ( that is what I do  (IM) or Immediate release narcotics you need to avoid as the fast released action will cause your patch to not work as well as it is a (SR) slow release drug. 

 

Im sure your partner in good health would have been very supportive in your time of need. 

 

I realize we are very distant from each other but that has no impact on my ability to care about you and your issues. Hang in there

 

Marty   

,

 

Hi Marty  well I went to bed  but now Im awake again and in pain, so Im trying to sit here and type to you and other readers on this site. Sorry Marty  I do find that reaching out on here some times helps, I had another letter from my mouth surgeon He took some biopseys from my mouth again,(stitches) and painful, but he wants to take more samples from my tounge and the inside of my mouth- well they think its Oral Lichen Planua and biateral buccal mucosae9 sorry excuse the pun- what a mouthful. going to look this up in a minute. He tells me that the throat issues are NOT connected, which again I dont understand. I suffer from sores in the mouth and cheeks/gums. I have to carry with me a spray to give me artifical saliva, as its difficult to speak and swallow, again going to work I find I cant stand up and talk to my students. I had to go and collect my medipacs today this is my list of meds .... ok i will continue later as Im getting  so much pain at this moment in time. Part 2 later  take care Jocelyne

Hi again. Just read your reply. Im am so glad you like my idea. It works for me. I can up with this idea when the doctor all of a sudden said well we are going to adjust you 50 mcg Fentanyl from 48 hours to 72 hours (due to FDAnew standards!!). At the time I went into panic mode! I though how am I going to do this without withdrawls. Now I realized it was the Fentanyl addiction that was getting in my head and making me panic, although the withdrawl aspect is extremely real too. So it struck me that I have control over medications put in my body not the doctors. Like a huge bright 200 watt light bulb came on and it hit me. I can control the patch amount by just cutting the plastic that it sticks on! LOL if I find that I need a little more that day, I think first. I figure out wether its the physical activity that I am doing that day and the pain ratio OR is it the Fentanyl in my system saying give me more. Most of the times its that later. Then its just a mental game and talking yourself down that it is just the drug. Like you I live alone. When you spoke of the camping incident I was right there with you and knew exactly what you were going through and experienced. its extemely rough. Fentanyl does help me, in fact I am walking becauseof Fentanyl. With that said it is extremely controlling. I know I have to be on it since my bodyis sensitive and other pain medications just make me non functional like a zombie and really sick. Ive tried a bunch of them even Opana ER. Now Opana ER ended me in the emergency room with my throat closing!! So realizing I have to be on Fentanyl was a matter of acceptance. The second step is to find the right dosage that you can get by with, that relieves your pain to do your daily activities. Third is to deny deny deny the access to your mental and dontlet it control you saying you need more, because you already know what works for you and it is just trying to suck you in and your body wants more - thats the hard part. Dont fall victim to "its" wants. You are in control. I still get that feeling ocassionally of wanting more, but never do it. I have my plastic strips where they need to be and just tell myself - no do not pull off another plastic strip, thats for tomorrows day! Trust me on day 3 you will be happy you saved that last piece of plastic to pull off, what a relief it is to have three days of equal pain coverage. I sincerley hope it works for you like it does for me. Please let me know how its going. Your 110% correct, we are the TRUE voice of Fentanyl users. Im so glad when I can help others through my experiences. God Bless and Ill keep you in my thoughts.

Hey Jocelyn,

 

I understand what you mean by thinking reaching out on forums doesn't help. but in reality it does! It may not help with the physical pain and suffering that we endure daily. However it does ease our mind to know we are not alone and pir mind is a very powerful tool in combat of pain.

 

Hey I can feel your anxiety through your message all the way here is the USA. I think you should see your PCP and discuss this with them. I hope you shopped around for a compassionate Dr to treat you into your Golden Years. I did and made sure he was my age so he would be around when I reach my 100th birthday. I am only just a little more than 1/2 way there.

 

I will also look up what your Oral Surgeon feels you have. I guess your government is also cracking the whip on prescribing pain meds? I just love how our Gov. lumps Heroin OD's with Prescription drug OD's. All cutting off severe pain patients will do is create more heroin users i think, as that's what I would do at my pain level and dose  of the Patch.

  Speaking of surgeons I am scheduled for knee surgery May 4, as some how I tore a meniscus and the Dr says it cant heal on its own. It must be on the inner side which has poor blood flow, and without blood you have no healing.

 

I also have poor saliva issues but I tried Biotene a mouth rinse to help give us back Saliva and with a med change as Wellbutrin SR was added to to the 17 meds I use During a Drug screening I tested positive for Morphine a drug that turns a mild manner back pain suffer into a MONSTER!!! Its in my chart to never give this to me  and some PA enters my treatment room all big and bad calling me a drug addict. I have been seeing the Medical Director for 19 yrs and never tested positive they tested me with saliva and urine and both were negative. The were having computer issues that morning saying screens were flipping on them, I think the idiot PA had the wrong drug test as he didn't bring in any results just bad attitude. I think I at least deserved to see if they had my test as I take make drugs that would have shown up and I wanted to see if thoses levels were correct.

 

Do you have a Federal disability plan in the UK? If so have you considered signing up. I know its hard to  live as we all pretty much live pay to pay. but there are places where we can get help until you get full total disability and pain is a reason to get disability. I serve on a few forums on our program as well as one States Work Comp disability program as a senior member and WC specialist in New Jersey and I have heard it all after 16 yrs of advocacy.

 

Well sorry I got long winded but I wanted you to know you had a true advocate as one who is reaching out to you for friendship. If you have a Federal plan can you send me link through PM cause this site holds posts with links until it can be checked out as legit 

 

Hope you begin to feel better

 

Sincerely 

Marty      

 

Tami, Your way of leaving the patch cover on and only removing some of the sticky covering is a very wize idea and I never would have thought of it. I give you much credit for posting such an excellent way as you may have saved countless lives if any one is reading this thread. 

I nominate you for the Noble Peace Prize in Medicine for the year 2016  

Marty

Lol....thanks, pretty funny! Just trying to help others out there that really need it. I always am very aware do my homework on anything I put in my system. Doctors seem to want to group everyone in the same catagory, but everyones body is different and reacts different. I just found what works for me and still have control over my meds. Thanks for your comment. Have a great day.

Hey  If you look at the stasrt of this topic  You would have seen the cut the corners one step at a time   It was MEEEEE  who was told by my doctor that would be the only way I would ever get off it.... and it would take me possibly 1-2 years as I change my patches every 72 hours   and yep it will make med feel  like a big yellow devil                          Help  Im going loco  oh my goodness just seen the time  its 02.59 on Tuesday morning.ahhhh   Jocelyne Cambridge....

Jocelyne,

 

You are a HOOT!!!

 

So my first post on this thread I misunderstood. I thought you were cutting your matrix patches and not the covering that covers the sticky part. Boy don't I feel like I'm new from the USA?

 

Marty

 

I dont cut the plastic cover corners off  I turn the patch over with the plastic cover and cut a section off the actual patch   ahhh now you can nominate me for that  Noble Peace  patch prize.

Jocelyne  Cambridge  UK.

I am sorry to be totally dense, but I do NOT understand what you are doing if you are not cutting the plastic cover off the patch in segments, like Tami describes.  I dunno, maybe we are talking about two different kinds of patches?  Or apples and oranges? Or bananas and mangos?  I am not worried, unless you are cutting into the reservoir that has the drug in it, cuz if you were, you would be dead and not posting on this site.  I am just curious as to what you mean. Duh.   Please enlighten me, oh Nobel Peace patch winner!

Thanks, Leigh

Hi Leigh, firstly can I ask are you from the medical proffession, as If yu are and you work in a pain clinic in the UK, they are the people who control our pain meds,  it is on their advice that I have relayed the way to cut back on the Fentel durergisic patch  Im on 125 mg  which is one 72 hr patch  at 25 mg and a larger patch again to change every 72 hours of 100 mg.  ie  put them on on Monday change the patches on Thursday  put the new patch.  on Thursday Change again on Sunday......

Now because I have the  PHN and with my cronic pain from arthritas I was coming down from my patches by taking small sections of the patch  medication away, but now they have increased the meds  I take another controled drug Oxynorm (fast reacter) I can take 5mg every 4 hours if my pain become to bad that  and the patch  has now kepted my pain at bay.  Another drug that I will have to come off of.. YES it scares me that im on such high meds and yes we are lucky that I dont pay for my meds in the UK. people 60 plus have free meds  (that is at the moment)

ok here goes  I take clonidine/gabapentin/levothyroxine/mirtazapine/Omeprazole/Ramipril/simvastine/co-amilofruse/Durogesic transdermal patches/Oxycodone/hydroxychloroquine

its scares me that my body takes them every day (21 tablets in total a day)

 

This was a tremendous post Tami! You hit on a lot of things and your perseverance speaks to all of us; you're helping people kid. Continued success to you!